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

Wednesday, January 26, 2011

Catching up

Sorry, I didn't get home until late last night and so coudln't update.

Yesterday was another bad day.  I was up 7 times that I was awake enough to count during the night, and since I am so sedated if I counted 7 it would be more like 20 probably.  I stayed home from work (ick, now I have to work the weekend), and slept all day.  Literally slept until 3:15 when I had to get ready for the dr.

The doctor had tried to get the pulmonologist to see me, but the pulm. is too busy and the back-up one isn't as likely to listen to my doctors.  So Dr. Body is trying to handle this with some input from the dr. who couldn't take me (I suspect that translates to wouldn't). We went through a lot of possible contributors and ideas.  Ultimately we settled on I will work 3 days next week.  I will be off 2 days that week and then possibly 2-3 the next if needed.  During that time I'm going to have a pulmonary function test that should thoroughly diagnose asthma.  I also will continue with the med I've been doing ok with in the AM with using my PRNS to control the mania from it, and will add it to the night.  I'll then increase my seroquel so I am sleeping but hopefully not so exhausted all the time thanks to not sleeping.  I was taking 750 mg of seroquel before I got sick and psychiatrically felt better there, so hopefully this lets me go back up to a higher dose but stops the constant awakenings to cough and get water all night long.

If that doesn't help then we face a gamble of which part of the current med helps more, the steroid or the other part, and we'll try one of them alone.  Thankfully it appears to be the non-steroid yet still hard to handle with BP stuff.  But if things go as it looks possible I may get to manage this with a not so bad inhaler and then a makes-me-manic rescue inhaler.

I was away so long because I had to see Dr. Mind too.  I haven't been hearing back from Dr. Brain.  I'm not sure how to handle that exactly, but apparently they've been communicating so maybe that's why I don't get answers.  I'm struggling because I feel like she's mad at me or something as some questions have been reasonable.  Anyway, I got a little annoyed because part of her input was that the whole pulmonologist fiasco of last week was just that I'm not as sick as their usual patients.  I respect that and  think I said as much to someone last week.  But that wasn't my problem; my problem was that they were letting me explain what was going on and why I was there until they heard the word bipolar and then I wasn't allowed to talk or explain, just answer questions that were not relevant to what I needed.  And no matter how hard I tried to get them to listen they wouldn't.  And if that hadn't started only after they heard "bipolar" then I wouldn't care, but it did and that makes me very angry.  Which is why Dr. Body is now my pulmonologist.  So that level of misunderstanding did not help any.  I know perfectly well that typical asthma like mine is easily managed and is like a cold to those specialists.  I also know that since my family doctor feels out of his arena in treating this because of the high risk of making me manic, and because he can't hospitalize me if things get out of control, then that means I need a specialist.  Not because my asthma alone is complex but because I have a number of complex illnesses combined.  It's not fair that doctors hate dealing with bipolar people so much that poor Dr. Body winds up being my specialists.  I can't find a nephrologist who is interested in dealing with my annual visit for diabetes insipidus which involves looking at labs, looking a urine specimin result done in office, and making sure my medication is keeping my electrolyes normal.  Literally 15 minutes per year, but the only option around (I think; one big practice) screwed things all up and tried to put me on a low potassium diet when my potassium was at the high end of normal and had he only asked he would have learned I eat a lot of potassium, therefore the higher level.  I can't breathe but that's overcome by bipolar.  It makes no sense.  None.

I think my supervisor at work is mad at me for the time off.  I am trying.  My boss is fine with it and the bipolar; the bipolar obviously makes my manager feel like she needs to be cautious of something.  I think I'm going to tell her that I work so closely with my doctors and monitor myself so closely that I don't even remember what another person would see before I do because I always see if first and if I don't Dr. Mind does.  Both Dr. Mind and Dr. Brain are able to see mood changes within 30 seconds of seeing me.  Dr. Brain also can tell from how I write to her when I email.  So that's hard; I understand her feelings yet she hasn't felt that way about me until she knew so why change now.  I think that's what I'm going to tell her.  I hate this. I want to just be me, not bipolar me.....

And if I don't get paperwork done I"ll be in trouble me.


Anonymous said...

Am I to understand that bi-polar means "bye bye and see you later" to other doctors? That is just so wrong. I bet you feel like you're on a merry-go-round. "A number of complex illnesses combined" requires "a number of learned specialists combined" - is that asking for the impossible? Grrrr and very frustrating for you I am sure!

Sounds like you were TRYING to advocate for yourself and got nowhere last week, and were also misunderstood by Dr. Mind.

Jen? How DO you carry on? Sheesh!

This WILL get figured out - you will see to it. And then, it (the asthma) will be another something you will deal with. And you will be fine. So I will pray for patience for you. And healing. And also oxygen. And sleep. You will be better. You will!


WinnyNinny PooPoo said...

Doctor's offices are supposed to be educated about things like Bipolar. It is a shame in this day and age people still have misconceptions, and a worse shame when it prevents you from getting adequate care.

Hoping as the irritation and damage from the whooping cough disappears the asthma will ease up and it will become a non-issue!!

Michal Ann said...

I'm so thankful for Dr. Body and Dr. Mind. You've done such a good job of advocating for yourself and developing relationships with exceptional caretakers. I'm also relieved that your manager is on board with the program and that you'll be able to take some days to recouperate and get treatment. Keep goin'

Praying for your R+R with lots of oxygen and rest! May your heart, mind, soul and spirit find rest and peace as your body heals.

Philippians 4:6-8 (New King James Version)

6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Meditate on These Things

8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.