Waiting for them to come...

Stayed out a bit later than I should.  Hematoma wasn't hurting earlier.  Showered as if I'd not had a large needle shoved into my back a week earlier.  Only hurt a little after so didn't take anything for the pain or bring anything with me for later 'just in case'.  It now hurts.  Has been hurting.  Been hurting for hours.  And now I'm home and have to take the med that will bring about the nightmares I can't wake up from.  Oh, and I have to be up at 7:45 in the morning.  About 12:45 now.  It'll probably take 1-2 hours for the tramadol to kick in.  Guess I should get on with the non-nightmare sleep while I can still get it.  Please Lord keep the nightmares away.

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*

"When someone asks you if you're a god, you say YES!"

Visited the ER today.  Woke up this morning nauseous and the minor pain/discomfort that has been building since the biopsy to the left of the drilled in hole had moved further around my left side and was making it's way towards the gut.  Got up and went in to work long enough to tell bossman I was leaving; God bless him for being understanding.  Drove back home and managed to hold in last nights dinner; barely.  Went back to bed.  Have been avoiding the tramadol due to the nightmares I can't wake myself up from.  Slept till 12:30ish (aside from a phone call from J around 10:30 making sure I was still functioning as I'd called and asked him around 7:30 if he'd check in on me).  12:30 and still in a bit of pain and lots of discomfort.  Called nephrology nurse, V, and I left her vm.  About 10 minutes later she calls back and goes over symptoms and of course, recommends getting checked out by the ER.  Got there sometime after 1 but still within the 1-something hour.  Checked out around 5:45.  A played chauffeur (THANK YOU) taking me to/from ER and keeping me company and laughing while I was there.  The laughing didn't help with the pain, but I totally appreciated the effort.  Tests run and CT scans performed.  Blood on tap was kind of neat to watch as they took it out.  First test back was showing I wasn't pregnant.  Well no ****.  Have to have sex for that ;-)  Told them I wasn't and they ran it anyways; guess everyone has to get their buck.  High white blood cell count; no kidding.  High potassium; weird, but not earth shattering.  Prescribed goop to drink for that to bring it back down to normal level; currently waiting for it to kick in and do its thing.  Peed in the cup and they found oober trace amounts of blood and mentioned the word 'hematoma' (sp?).  Those things combined are apparently what's causing the discomfort/pain.  Still doesn't explain why it's getting worse, not better.  But they said to take pain meds and if it's not better by Fri to follow-up with nephrology.  Also told me to call and follow-up tomorrow with nephrology anyways.  Since I'll already be there for the rheuamatology appt where they will tell me that the biopsy didn't give us a dang bit of useful information, figure I'll just stop by Dr M's office while I'm in the neighborhood.

*deep breath*


Can't afford to keep doing this but I don't have a choice.  I wouldn't have gone to the ER if I hadn't believed something was actually not right; hate ER's and the docs working there normally don't give a frak.  Today's ER doc I give kudos too.  His bedside manner was a bit lacking, but after wandering off after giving results he actually came back twice while I was waiting for discharge paperwork to ask me a couple of questions about my past history and some other stuff and actually called up my nephrologist.  So Kudo's Mr ER doc for seeming to actually give a crud; you're many cuts above all but one who has come before you in my last 11 years of visits between Houston and Austin.


Maybe we'll know something more tomorrow.  Maybe we won't.  Till then I just need to stay awake as long as possible to keep the nightmares at bay as there's no one here now to wake me from them and won't be for some time.


...

Things will be better tomorrow.  I give them no choice.