An.... interesting day...

Rheumatology appt with Dr P this morning.  As previously relayed, biopsy came back showing no issues with kidneys (yay!).  If issues had been found, then I would have been slapped with the lupus label.  As it stands, I'm back in the UCTD category.  Still known as "well, we know you have a connective tissue disease of some flavor but still not sure exactly what".  Least we've held on to something I suppose :-)

So here's the new plan:

Dr P took my biopsy results plus my year and 4 months-ish chunk of history/tests and conversed with the other rheumatology folks.  The powwow appears to have resulted in agreement amongst the masses on where to take treatment next.  Now keep in mind the ultimate goal, random crazy side effects of medications...well, aside, is to allow me to live every day, all 365 of them, without pain.  Points. for. effort.  Switching to the methotrexate via injection was a HUGE step back in Dec, but still only really allowed for days of no pain followed by days of pain; wash, rinse, repeat.  Especially once I started lowering the prednisone again.

Enter new plan: Rituxan.  Delivered via IV in two doses with a two week space between the first and second and repeated every 6 to something more months depending on how well my body takes to it.  I'm told that this drug will allow me year round no pain.  It will also let me FINALLY get off of the prednisone.  They want me to keep taking the methotrexate for now.  The maloxicam and the plaquinil too.  But... it gets me off the steroid drugs I've had to take over a year as of this month when max you should take it ever is 3 months I'm told.  It will be nice to be rid of it.

Here's where some more fun kicks in.  I'm about out of time at work.  Really and truly out.  And it's great that we're in June because 6 months from now we'll be back to when time will reset in Jan so plenty of time off, but as for the rest of this year... I'm pretty much fraked. So that 2 days I need for the first treatment of this stuff... I have it, but it's the last of the petty cash as they say.  I put in for FMLA today.  Absolutely hate having to do it, but it means I can take off for all these appointments and treatments and bloodwork and what not and even though I don't get paid for the time I'm gone, at least I won't have to continue doing creative scheduling with my boss and risk losing my job for unapproved/available leave.  Got them to fax it to me earlier so just need to fill out tonight and take to hospital with me in the morning when I visit the vampires for another round of bloodwork for nephrology as they want to apparently keep an eye on the hematoma thing that's still causing my back/side pain.

It's good news.  Overall, it really is.  Still no label, but then again who needs them anyways... Well, except insurance.  As lupus and rheumatoid arthritis fall under UCTD, I get the RA label for insurance purposes so that crazy 6 month lasting drug will be covered.  Humana thus far hasn't done me wrong; here's hoping it lasts *crosses fingers*  The powers that be that converse between doctors and insurance for such things were supposed to start working their magic today and Dr P would like to do the first round of the two round treatment in the next couple of weeks.  L, who has done one round of this drug before I found out and may be doing it again, said the first couple of sessions I might feel queasy as my body adjusts to the chemicals.  Oh... did I mention that the reason I'm having to take a day off for the process is because the IV thing lasts 5 hours??  Was advised to bring a good book.  Eek!  She also pointed out that it's better to feel crappy for two days and feel great for the rest of the month.  God bless her and her silver linings :-)

On the biopsy front, was feeling completely and totally weird today.  Just not all entirely there in a physical or mental state.  Missed breakfast thanks to doc's appt which didn't help.  Had a couple of hamburger patties w/cheese for lunch which wasn't enough.  Took meds plus good pain med which didn't really kick in in a reasonable manner and thanks to its slight tummy upsetting factor I didn't take when I got up this morning thinking I might get some breakfast but sadly that didn't work out.  Oh.... also didn't take one before bed last night so I wouldn't have nightmares.  And ummm.. stayed up till nearly 2am trying to make sure the one I'd taken earlier in the evening had worn off so I uumm.. wouldn't have nightmares.  Did I mention before the nightmares when taking tramadol? *shudders* Anywho... with my wonder twin not entirely smart factors combined, I spent most of my day completely delerious and in pain.   Had a 1:1 meeting with my boss this afternoon and I honestly have no idea what we talked about.  I'm fairly certain I rambled, but not the slightest clue what I may have agreed to or provided as status on anything I've been working on the last two weeks.  Eesh.  Guess I'll find out tomorrow.

Think this pretty much up to dates us.  I got derailed on the last part but I'm pretty much you're not missing much.  I have to get that FMLA paperwork filled out tonight and make sure it makes it in to the hospital with me in the morning so I can drop it off for Dr P.  Ooo... also have to get a TB test as it's apparently one of the pre-rituxan requirements.  Might as well get that out of the way too.  Hmmm.. wonder if I can get allergy shots while I'm there too.  ...  They really should just start renting me a room.  ;-)  Yeah.. that was humor *points*  I'm still trying.  There's got to be more silver linings in here somewhere.

As of course this blog is pretty darn self-focused on my rantings, please allow me to take this sentence moment out to thank you folks that are taking the time to keep up with this.  Know it's not a happy fluffy shiny blog, but my ole brainpan isn't all that good for the rememberings this days and I want this place to kind of help me keep track of my world-o-health mess.  Really really really really love and appreciate you folks.  Even you anon folks who comment on occasion.  Support is support, even if you can't put a face to it.  And I've purposefully cut off support in the past not wanting to worry/bother folks with my issues and everyone's got problems of their own and I don't want to be a burden to anyone, but anyone who reads this does it because they care.  And it means a lot.  And Lord I wish I had allowed myself even a minute bit of support before I started up this blog.  Probably would have made the last year and change about five billion times more bearable.  But alas... can't change the past.  Good thing is I have at least this little bit of control over the future so I'll just keep rambling till my fingers/hands give up the good fight and hopefully when the smoke clears there will still be folks there to help me keep them on ice till I can see about reattachment options :-D  See?  More humor.  There's positive in here somewhere dang it.  Just gotta keep digging.

Anyways, thank you folks for sticking with me.  You really won't ever know just how incredibly awesome you are for doing it.  It's hard taking that step to ask for help when you feel broken and that no one will want you.  And I have ya'll to thank for continuing to hold my hands and let me know that it's ok to accept a little help now and then.

Love you guys.

*hugs*

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.

The ever elusive "First Post" including "The Plan"

I assure you there were grand plans for this first post.  GRAND PLANS I TELL YOU!  But to put down the last year and three months of my life into one post seemed a bit unfair to any future readers so for now, you're safe.  Will give you a bit-o-background on what to expect from here on out, though:

 The Plan

  My intentions for this blog are to use it as my source of ranting, raving, venting, and on occasion crying and outpouring of my mind, heart, and soul in regards to a certain health condition that has plagued me since Feb 2009.  Don't worry readers, given enough time you'll get more details than you ever wanted about it.  Hopefully mixed in with all that there will be some happy too.  For instance when they find out what the root cause is we'll have a bit of celebration via the blogness of awesome.
  I suppose I'm also using this blog in an effort to not feel alone in this journey.  As the song says, 'it's been a long road gettin' from there to here.'  I may not like to admit it, but I'm terrified of what's happening and the thought of continuing to do it by myself scares me.  Yes, I have friends and family who are aware of my condition.  But to be honest, I'm not sure I've shared everything with any one person; hate to make folks worry.  I want this blog to be a record of the beginnings, the stepping stones I must tread along the way, and maybe not the light at the end of the tunnel yet (I hope), but perhaps the light shining through the door of more knowledge regarding where this road will take me.

Thanks in advance for walking with me...

*motions everyone to proceed to the first stone in the path that's big enough for everyone to stand on making sure no one's left behind*