"I can feel it comin' in the air tonight...."

Where to begin, eh?  Has definitely been awhile and for that I apologize.  Life's been.... interesting.  Word on the prednisone front was that I was down to 5mg before last week.  Not too shabby having to cut back down from the 40mg again.  Now, though, we're on 60mg.  Long story short is I ignored a cough for a week and a half and found myself in the ER and then checked into the hospital for a couple of days; totally not recommended.  Post bronchitis lungs are at half capacity of what they were two years ago per my allergist so he re-upped my prednisone to a crazy 60mg for 5 days to try and get them jump started along with doing a crazy inhaler twice a day.  Between the two it seems to be helping though the latter I found keeps me wide awake at night; at least if I do it right before bed.  So, tonight I took my nice deep breathe inhale of it around 6.  Is 11pm CST now.  Sleepy as I didn't sleep a wink last night despite NOT doing the inhaler and best efforts of tossing and turning proving about useless on the nap time front.  Really hoping to get in some good sleep tonight.  Not sleeping is one of the bad things on my cardinals rules and tends to lead to my being overly goobish and emotional.  Totally not fun.  At least the crazy 60mg thing has brought my appetite back after a couple weeks of nauseousness from the whole bronchitis/not enough oxygen/migraine headache thing.  The last two were heck on the tummy and trying to eat.  Ugh.  Thankfully, going to drop back down to 5mg of prednisone tomorrow.  Then... well, I'm debating just cold turkey and forgo the 1mg/week thing I'd been doing to get down to 0.  I'd like to think 5 to nothing isn't that big of a jump since I'd done 10mg drops before to get down to 10.  Don't know.  Still have a day or so to think about it.  Just want off this stuff so badly.  Should have seen me when the allergy doc, Dr S, told me that he was going to have me taking 60mg.  Yeah.. those were tears.  He looked at me like I'd grown a second head.  I explained to him that I'd finally gotten down to 5mg... and it's taken me SO long... since May 2009 to be exact, to get this far.  He said it was only for 5 days, but I know what that can do.  Especially since that was 20mg more than I'd ever taken at once before.  Only took 4 weeks last summer to gain 20lbs at 40mg.  Was terrified what 60mg was going to do to me.  Yes, now that I have a drug induced appetite again I'm eating which is better than the not eating I was doing before thanks to tummy issues from yucky migraines from lack of o2, but still not happy.  Was at 208 this morning.  Was at 202.5 when I got out of the hospital before.  Think that was the 20th.  The lung doc at the hospital who was kind enough to sign me out and also told me I didn't have pneumonia but instead bronchitis had me on Levoquin (sp?) for 5 days after I left the hospital.  Cleared up the last of the bronchitis, thankfully.  Never know how much you need o2 till you don't have it anymore *shudders*  Anyways, lowering the prednisone.  Think I'll try cold turkey.  If it hurts, can always take it again.  Have plenty left and found some more of the 1mg's the other day in the bottle that's expiring end of Sept; will use them first if I have to.  If I can hack being off the prednisone, going to approve Dr P and see if I can drop either the plaquenil and/or methotrexate and see if I can do without one of both of them and let the Rituxan be enough.  Please Lord let it be enough.  Though I believe post-hospital bills will take care of my deductible for the rest of this year so shouldn't have to pay for more medications, still would like to have less to have to fill the cabinet with and have coursing through me, ya know?  Points for effort.  Some day I won't be a walking pharmacy.  I keep telling myself that.  Really want it to be true.  Really wish my hair would stop falling out too from the methotrexate, but that's another rant.  Next time the spare change fairy hits me and M are going to have to come up with a new hairstyle for me.  Current one just doesn't work with how thin my hair's gotten the last 8 months.  I dread making it shorter, but it's so obvious how thin its gotten even just at shoulder length.  ...  Worries for another day.

Lots of details left out.  Know I've had the blog in an effort to take down everything in lots of detail, but this is what I get for putting it off.  Promise myself now I'll take more time to post in the future.  Barely walking into the ER a couple weeks ago wasn't quite sure how many more of these I'd be making.  Note for self-preservation: when you're not getting enough o2, GET IT CHECKED OUT.  Totally not worth waiting till you can't walk/talk/breathe/sleep/eat in any combination.  Bad juju.  I have reaffirmed that I know my body better than anyone else out there.  Next time it tries to tell me something is wrong, I'll listen earlier and get it seen earlier instead of waiting and hoping it goes away on its own.  Cause thanks to this whole 'lowered immune system' thing from the Rituxan, it's likely to not go away and more than likely get worse the longer I let it go.  Don't do as I do, do as I say.  *grins*  Least that's what mom always said.  Except from now on think I'll take my own advise and get checked out.  Hooray insurance.  I've discovered that copays are nothing compared to what the real charges are before I get the post-insurance bill.  Thank God for insurance.  Which reminds me, won't have Humana next year.  D's getting rid of it as an option and leaving me I believe with Aetna that I've heard horrible things about and United Healthcare Choice Plus or something like that which I currently know nothing about.  Things come open for choosing beginning of Oct so waiting to get info from D.  If anyone's got an opinion one way or another about either could use any insight that can be provided.  Hate the thought of changing as I KNOW right now what I have to pay to who and who takes what and have had no problems so far with Humana the last two years and claims going through insurance.  No fuss, no fighting, nothing.  Can only pray whomever I choose for next year I have as good of luck with.

Otay, ended up being a crazy long update after all and mostly my rambling again.  Thanks for listening.  I'm sure there will be more soon.  World's probably going to change either for really good or really bad here really soon; next couple of weeks.  Here's hoping for the really good.

*hugs*

42

Final infusion (least this round) completed last Fri (7/16).  This time, no face trying to beam back to the mothership allergic reaction; bonus!  Slept all but the last 45 minutes or so; got underway around 9amish and headed out around 1:30pmish if memory serves.  Got to hug my favorite nurse J on the way out and she said she hoped this worked for me; me too.  Told her of my delay in drugs last week from forgetting and not feeling anything when I did take them 8-9 hours late and we both agreed it was an awesome sign.  I repeated that mistake again tonight (totally don't remember phone reminding me this morning) and so far don't feel any more tired/achy than I should given the weekend I had.  Good sign still seems to be good.

Down to 20mg of the prednisone as of last Fri; lowering 10/week till we get to 10 then will lower 1mg/week.  Unless I get impatient... but going to try not to.  So this Fri we go down to 10 for the next week and then after that keep working toward that goal of notta.  Hooray light at the end of the steroid tunnel that's not a train.  Getting rid of the meloxicam doesn't seem to have made a difference so glad it's gone and hopefully we can keep it that way.

Side note is I used the last of the non-existent petty cash to buy a Droid X.  Haven't really had time to play with it; waiting for music to transfer to it now.  Tomorrow I plan on learning how the heck my new toy works.  Going from an iphone OS to Android OS has been semi-challenging for the few minutes I've had to play with it only because I'm constantly having to resist the urge to del everything on the pages and then put all my icons onto as few crammed pages as possible.  ... I've been programmed!  gah!!  Once I can get over that, think I'll enjoy having each page dedicated to some flavor of something.  I THINK I paired my phone successfully with my car, Kaylee, earlier.  Was too late to call anyone to find out and I hadn't been home to add music to it yet so nothing to play over bluetooth.  Will see what trouble I can get into with it in oh.... 3 1/2 hours is when I should be driving in to work.

Tomorrow's going to be rough... not enough sleep.  Been breaking a lot of the cardinals rules recently; not enough sleep, forgetting to eat, not taking meds on time and oh.... stressing.  Did a lot of the latter this last weekend.  I think that's actually breaking all 4.  Not good at all considering I'm lowering the dose of the one that consistently keeps the pain away and I have no guarantee yet that the rituxan's actually working the way I think it should.  ... Must get back to obeying the rules if this is gonna work.  *waggles finger at self*

Music 85%.  Ugh.  Guess I can leave it running and hope the cats don't mess with the phone.  ...  Yeeaaaahhhhh..... With 3 hours till the alarm goes off it doesn't look like I have much of a choice.

Hope everyone has a great rest of week.  Follow-up appt with Rheumatologist next Wed; girlie appt for anti-munchkin doohickey next Tues. Will of course keep anyone whose interested in wandering into my blog posted on how things go.  Worse case next update will probably be next week.  Then again, might just show up to ramble now that the health post I'm hoping *crosses fingers* will be few and far between starting here real soon.

*huggles*

Good night and good morning everyone :-D

Some random early morning bits-o-info

Got a call today (well, yesterday at this point) from Dr N's nurse who told me that the bloodwork came back and though the B-12 is showing within the normal range, apparently it's juuuuuuust barely in normal and the barely is on the low side.  Doc prescribed having me take 1mg of B-12 once a day.  Guess we'll see where this gets me.  He believes it should help.  I don't even know what a B-12 does.  Think I'll put that on the list of things to look up later today.  Nurse also told me that Dr N talked with Dr S in allergy who as expected, wants me to pay $30 to come in and talk about alt options for helping with allergies that doesn't involve the zyrtek-d.  Politely told the nurse I'd call Dr S's nurse and tell them I can't afford to come in to talk and would like to see what the options are over the phone or I'll just keep on trucking with the zyrtek-d.  Adding them to the list of folks to call today.

Still no word back from Aetna.  No call by lunch and I'll give them a buzz and see if I can get the 411.  OH!!  Heard back about the chest x-ray.  No alien much to my disappointment, but as it's clear insurance has cleared me for the Rituxan.  Only thing I'll have to pay out is another $30/visit as if I was seeing the specialist.  Could be muuuuuuuuuch worse.  Supposed to get a call from the infusion nurse to set up my first round; going to delay setting a date till I know I'll have the intermittent leave to cover my appts/tests/whatever for the rest of the year.  If it gets rejected, all this gets delayed will Jan when time resets.  Still pretty stressy about having TONS of time off beginning of May before my cruise and now only having a few days total between PBA and vacation :-(

Green Sorsha needs full paychecks badly!

Good news is a wonderful lady, K, helped me with my resume today and I might be putting in for a project team type job if my luck holds in the next couple of weeks.  Even broke it to bossman of awesome today that there was a chance of my looking elsewhere and though he was bummed at the prospect of losing me, he was also super excited about my getting to move on to greater things and even offered to go through some mock interviewing with.  In case I haven't mentioned how awesome my boss in recently, he's pretty darn spiffy and goodness am I lucky to have him.

Though my time may be short and it may be the one thing that kept me from getting the Exceptional rating the last two years on my reviews, hopefully new future bossfolk will see past that.  Yes, the health gods aren't currently with me.  However, they should be soon.  HOPING that after the follow-up appt after the second infusion of this first round of Rituxan follow-up appts with Dr P should be MONTHS in between; I'm hoping one more in the fall and then another when we hit the 6 months in Jan.  Means the only other appts left are the crud neurology wants me to get done and a follow-up appt with them.  Then.......... *knocks on self* may it will be quiet.

Here's hoping.  Needing to be oober shiny come Aug/Sept for more than a few reasons/people.

*checks time*  Yup.  Just about 2am.  Alarm goes off at 6.  May be Fri, but gots stuffs to do.  Poor lab is in a state of chaos that's likely going to take the whole frakin' day to pull out of.  Once done, though, should be shiny.  At least till I head out for more software testing or if I'm lucky, to help head up some of it with the other project team folks.  *crosses fingers*  Even if there's a pay bump, that part's really not that important to me.  Will be nice to get into a role where I really feel I can contribute.  Any extra pay is just icing that lets me pay down the leftover R debt faster and get back to getting back to college.  Points.. for... effort....

*hugs*

Sleep well folks.  Hope everyone has a great Friday and weekend!!!