A whole lot of nothing still equals nothing...

Thursdays tests came back pretty much the same as the previous two even with fasting before the last round.  Got a call earlier from Gastroenterology who have set me up an appt to see Dr N Thurs at 8:45am.  The noted reason is "abnormal liver function study".  Looks like we're starting with them and if they find nothing then we move on to the bone folks.  And hopefully they find nothing and we do this test again and it shows nothing and we carry on with things as they were before last week, but still not as they were a couple years ago.

Needing things to stop being bad.

"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*

calm before the hopefully not storm...

Called Friday to check on the intermittent leave approval/denial and the word was no word.  However, nice rep lady on the phone said that everything looked good for getting the approval, the only thing pending was... the approval.  She said she would send a note to the rep that needed to click the button and that if I hadn't gotten a call letting me know the outcome one way or another by lunchtime Mon to give them a call back and check in.  Easy peasy.  Remembered to call Dr S's office in allergy and talked to their nurse who talked to the doc who of course wanted me to come in and talk options and I politely told them I couldn't so nurse lady said she'd see what Dr S could come up with and get back to me Mon.  Been on the whole not taking the Zyrtek-D since my appt with Dr N last week and dude... allergies not happy.  It's not...awful, as I had expected, but I'm definitely making with the kleenex more than I'd like.  I'm sure we'll figure something out.

No call yet from the schedulers for the infusion.  Guess when I told J to have them hold off on calling till the leave thing was certain she took me seriously.  After this episode of Buffy is over, going to watch the Rituxan dvd.  Have to get it over with and know what's the come.  Wish I had someone here to watch it with me.  I'm sure the drug will do exactly what it's supposed to and I'll feel fine and there won't be any crazy side effects and I'll get the nice 6 months w/o pain,but.... just need that hand to hold telling me that it's all going to be ok even if it's not.  Just in case.

**addition: DVD's largest section was 'here's all the bad shit that could happen'.  Understandably.  Overall, though, this stuff really seems to have helped folks and they look so incredibly relieved to be able to live their day to day lives how they want without having to worry about what doing one little thing could lead to days of pain.  Think they sold me on it.  Still think it's going to hoover, but right now the idear of no pain for an extended amount of time and ditching the prednisone vs an added chance of getting sick more often and having cold-like symptoms among a few other things really makes doing the infusions seem worth it overall.

Here's hoping.

Who says you can't post from your pjs...

Good evening folks!  Thought I would drop a line for some late night post-op posting purposes.  *yawns*  I hath been poked!  There at 7, called back around 7:15ish.  IV'd and prepped shortly there after and then waiting.  Sure about right about 9 I was taken back and after some questions and CT scan pictures and some sticky pads on my back of awesome, radiologist walks in and we're poked and being wheeled back out to the room in less than 5 minutes.  Crazy *** ****.  Apparently this guy's the best of the best, sir!  With honors!  I'll totally believe it.  Local anesthesia  only so I was coherent through it though the good pain stuff they did give me for the actual procedure was pretty stout.  Once back in the room I was told I'd be there another 3 hours.  Had some applejuice and J went and picked us up some breakfast from Mickey D's since the procedure was so short it ended up still before 10:30 so breakfast could still be snagged.  Two bacon egg and cheese biscuits down (yeah, I know, not on my diet.  but they were OOBER good) and the juice and first trip to the bathroom accomplished.  Was juuuuuust starting to feel the soreness in my back at this point.  Bathroom check and no blood.  Odd since I was told by nurses and docs and folks who have had the procedure to expect it, but nope.  Notta.  And still notta I'm pleased to report; guess I have kidney of awesome?  Or the goop the guy put in to seal it up after taking the chunk out for the biopsy is just that stout and he's that good  *shrugs*  Either way. no blood to me is a good thing.  Especially after how much I gushed out when they put the IV in.  Told the nurse lady she was using "ole faithful" and she didn't believe me.  Now she knows, and knowing's half the battle *smiles*  Anyways, bathroom trip over and some more conversation with J and I was starting to feel the terrible need for a nap.  The days this week leading up to the biopsy have found me with less and less sleep at night.  With the quiet hum-o-machines and almost able to ignore the bloodpressure cuff checking me every 20 minutes, decided to use the last couple hours for nap time.  J plugged into the wireless at the hospital with his computer and stayed occupied and I tried to find a comfy position for nappage.  Which I would like to report is impossible on those mini-gurney beds.  Cold too.  Tried back at first but no real success; just can't sleep on anything but my side.  Thankfully they only mucked up one kidney and it was on the left.  Which is the side i inevitably end up on by the end of any sleep time, but I always start on the right so at least I still had a free non-painfilled side to use.  Curled up, I think I might have gotten an hour in before the nurse came back and said I'd get to leave soon.  Upon waking.... duuuuuude.  I apologized to J right off the bat.  I was a cranky girl.  Hadn't snapped at him yet, but knew it was in there.  Was a whole new flavor of pain.  The best way I've been able to describe it so far is what it would probably feel like to be hit by one of the Ford F250 super duties with the big black metal grill on the front right into your lower back.  It didn't just hurt where they'd stuck in the super long needle.  No.  The whole lower part of my back felt like I needed a really long stretch but I knew that probably wasn't the best idea.  With permission to change back into mundane clothes and discharge papers signed, J drove the car around and nurse lady wheeled me out and got me situated for the ride home.  Lots of txt's and a couple phone calls made and thankfully J & M's house not being far, we pull into the drive.  Did... not.. want.. to... move.  Cranky factor was oober high.  Hospital provided no pain meds and my tummy was feeling a bit unfriendly so once hobbled into the house and switched into pjs I skipped lunch entirely and went straight for nap.  With the truck back hit effect, no position was comfortable but out of the different shapes I could put myself in, side seemed to be the least awful.  Think I got in a couple hours and got up around 4:30.  Hungry.  And still having truck to lower back pain.  Had some of L's chicken soup of awesome healing +10 which did wonders for tummy but it still proved angry from pain.  Dug into stash-o-meds I'd broght with me which included a straight up pain killer (tramadol) that I'd used before for the tendonitis stuff and popped one of those.  They can make me nauseous, but not nearly to the degree that vicodin or hydrocodone would have.  Took almost two hours to kick in, but currently I only hurt when I move which thankfully has only been for a few bathroom visits and readjusting on the couch while watching movies and visiting with my hosts J & M and A when he came over to visit for a bit.  Saw two new movies tonight; good times.  Has been nice having the company and support.  I really am blessed.

Anyways, that yet again I believe brings us up to date.  Think I'm going to attempt my 3 flights of stairs tomorrow night so I can be back in the bed of awesome +2 kitties of snuggling awesomeness.  Pain is yucky, but not nearly what I was expecting.  If I take the stairs slow and  then just don't go anywhere once I'm up there I should be fine.  Least that's what I keep telling myself ;-)

Word is by next Wed-ish the radiologists should have the results of the biopsy for the spiffy nephrologist Dr M.  Then we'll know.  Wasn't going to hold my breath before but think I will a little now.  I want to know what this is and I want to know what the future has in store for me pain and hopefully not-pain wise and whether or not there's a chance of me every being able to have healthy munchkins.  Have this stupid fear that if I can't produce a family no one's going to want me.  Same goes for feeling like I'm constantly broken thanks to this whatever the heck it is.  Who wants to date/be with someone long term whose in a constant state of broken?  Just seems logical that they wouldn't.  Then again, I tend to over think these things I'm told so perhaps my winning personality will win out over my walking pain and pharmacy factor ;-)

Here's hoping.  *takes a drink of cherry coke*

When I know somethin' ya'll will know somethin'.  Thanks for the prayers and well wishes and moral support in general.  None of you will ever know just how much it means to know that someone cares.

*huggles*

Think we'll see if I can get some more of that sleep stuffs in.  Night night reader world.

*leaves trail of double-stuffed oreo cookie "bread crumbs" leading to the next stage of the path*

Biopsy tomorrow *deep breath*

Yeah.  I'm nervous.  One would think with all the poking and prodding over the last 10 years, especially the last year and change, that it wouldn't be that big of a deal.  But this is a bit bigger than just giving blood to the vampires or having the dermatologist take a couple chunks out of my leg at her office when we got the latest inflammation stuffs.  Bleh.  Got an hour and a half left of eat/drink time.  Working on laundry to pack for a weekend stay at the best friend and his wife's house as they've offered up their guest room to me.  Finished taking care of kitties needs for the weekend so not having to worry about them.  Gotta make sure all the meds get packed in the morning so no one's having to come back up here to the apt.  Going to try and just stay Fri night and come home Sat if the kidney will cooperate once all the local anesthesia wears off.  Already missing the comfy bed of awesome and my kitties.  L was awesome and made me soup which is in J & M's fridge waiting for me for tomorrow.  L has lupus and told me what to expect with the biopsy as she's had plenty sadly.  Cliffnotes version is to expect it to hurt.  Between me and you readers, I've been enjoying the 40mg of prednisone and having no pain in my hands or feet or anywhere else for that matter.  Not looking forward to that slow decline to get off of it again, though.  And it also hasn't completely gotten rid of the inflammation red splotchiness in the medium/large blood vessels you can see in my legs.  So not sure if they're going to lower it at all or put me on something else or add something else to the crazy regiment.  lol   So close to having answers yet so far from knowing what the frak is going on and what's going to happen next.

Definitely nervous.  I love surprises, but will also bug the crud out of folks to find out what the surprise is supposed to be.  Normally would like their resistance to be higher and not to know, but in this case it'd be nice to have it over with and it be next Wed and have them just tell me what the frak's up and where we're going from here.  Waited a year and months now... what's another 5 or 6 days, right?  Pain.  One of those moments where it would be nice to have that somebody to hold me and tell me it's going to be ok whether it is or not.  It's only been a month and I've almost forgotten what the pain was like.  Before I couldn't go more than a few days before it came back and it kind of always stuck around the hands.  But WEEKS in a row without..... think more than anything else I'm dreading being in pain again, even if J & M will be around for company/distraction off/on over the weekend.

Guess I should keep working on the laundry so I can get the comfy pjs packed.  The stone I'll be stepping on tomorrow's unsteady, but would still appreciate the company if anyone wants to join me on it and hold my hand.  Think I'll be awake for the procedure.  Wish I wasn't.  But if I am, could definitely use some virtual hand holding to stay steady.  Totally wish they hadn't told me they were sticking me with a really long needle to get the chunks of my kidney out.  *sighs*

*huggles*

Night night folks.  Will update when I'm coherent tomorrow or over the weekend.