Well that could be a good sign...

Soooo even with my phone reminding me at 11:30 every day to take my mid-day meds of awesome, apparently I was so busy at work today that I forgot.  In the past, forget leads to "bad".  Bad being defined as within 2-3 hours the pain will kick in and then it takes 2-3 DAYS to actually get ahead of it again.  Reaching into my pockets and pulling out the metal cylinder of drug holding and giving it a shake around 8:30, I realized I may have missed something terribly important and I was holding it in my hand.  Math wise, this put me taking my meds about 8-9 hours after I normally do.  *boggles*  When I took them earlier?  Wasn't feeling a d*mn thing.  No pain.  Thus my forgetting about them all day.  What does this mean?  Maybe the rituxan is working :-)

Here's hoping!  Second round in two days.  Bummed I won't have my new Droid X phone to play with and learn while I'm holed up in the hospital, but I'll survive without I guess for a few more days while Best Buy pulls their heads out of their bums and gets more in stock for those of us who pre-ordered it and expected them to get in more than 3 for the first day.  ...  Goobs.  Will just have to take my netbook with me again and hope the interwebs are stronger in signal this next time.  *crosses fingers*

Anyways, had to share the good news.  Totally jazzed the good drugs may in fact be doing what they're supposed to :-)

*SQUEE!*

Here's the 411 on today's Dr's appt:

* Doc asked if I'd had any funky skin reactions to the first infusion: nope
* Told doc since he was going to be out next Fri when I have my next round to make a note that it's OK to water me down when I have another reaction to the initial steroid shot again and to resume the infusion once I'm done reacting so that we can keep doing it while he's not there to give the go ahead: check
* Given OK to do second round of dose one next Fri the 16th: yay :-)
* Given go ahead to start lowering prednisone dose from 40mg to 30mg starting today and just keep on lowering till it's gone: WOOHOO!!!
* Told to stop taking maloxicam: one less drug = yay!

Though I'm still a bit of a walking pharmacy, getting to cut one drug out completely starting today and lowering the steroid again with the goal of finally being off of it soon is absolutely fabulous news.  Dr P says right now goal is to get me off the prednisone and once that's done we'll take a look at the plaquenil next for dropping.  I asked about the leftover red spots on my legs from the medium/large blood vessel inflammation thing and he said hopefully it's just a matter of time before they fade.  The good drugs I'm on now aren't going to make them go away.  Thankfully the blister/itchy effect they'd taken on a few months ago before we re-upped the prednisone dose to tell with it is gone.  It's not getting worse.  It has in fact gotten a lot better than it was.  But now it's just holding and doesn't appear to be going away with what's left.  Used to have pretty legs :-(  Maybe someday they'll go back to that translucent white they used to be.  Hooray being so pale I glow ;-)

Bit of a side note from the UCTD stuffs, but still health related ish, am looking at getting in on this birth control thing called Mirena.  Best friend C has been using it for 7 months now and said it's awesome and recommended it to me with glowing reviews.  This ties into the general health stuff because as long as I'm on the methotrexate I can't risk getting pregnant; frakin' guaranteed birth defects.  After reading over the website last night and talking to C some more I think I'm going to go with this if girl doc, Dr MN, approves.  Cost should be what I pay for the visit and in theory, insurance will cover the rest.  Supposed to work for 5 years and if at any point my condition gets to where I can consider munchkindom I just go in and they take it out and I get to havin' with the munchkins.  Some bonuses of course are not having to keep paying the $35/month I'm paying now for ortho-tri-cyclen lo so that's a savings of $2100 right there over 5 years plus apparently women who use this flavor of contraceptive also after awhile don't have periods anymore so hooray no more products for those 3-4 days of awful a month.  Oh, and uuumm... no down time since period won't be happening anymore; hooray bathing suit weather year round!!  There of course are risks as with everything, but for the most part after reading the FAQ and the pdf of intimidation, the positives really outweigh the negatives currently.  Waiting on call back from nurse at Dr MN's office to see if it's something that they'd do and any good/bad stuff they know about it and see if I can make an appt in the next few weeks to get this done.  Hooray once less thing to worry about.  Oh, and one of C's coworkers had had this particular flavor for 4 years and never had any issues and when her and her husband decided to make with the munchkins and had it taken out, I think C said they were pregnant within a month.  Good to know :-)  Knowing someone who knows someone whose had it a long time with no issues during that time and was able to go about the munchkinness when it was taken out is encouraging.

Anyways, might be a bit of over sharing with the last part, but I figure since I'm trying to keep track of my health world here it was worth including.  Next up is the second infusion next Fri and seeing how things go with the lowering of the prednisone and ditching the meloxicam.

*crosses fingers*

Steady as she goes...

***update: Heard back from Dr MN's office Fri and though they said they normally shy away from doing the Mirena thing to women who haven't had kids yet that they're not totally against it, especially given my circumstances.  Will be going in on the 26th for the.. *ahem* installation. Nervous, but think right now this is the best option to try and ensure no munchkins while on crazy drugs and will help on the spare change front as well.

Walkin' in the spiderwebs...

Not quite the day after tomorrow, but it does in fact happen to be the day after yesterday's first infusion.  Had an esplodey allergic reaction face issue that thankfully went away after some saline diluting for about 45 minutes and we were able to finish the first round.  Think I headed out from the hospital around 3:30 or so.  During the process the only thing I noticed was that I was a little dizzy during the intake; when we switched to saline there in the middle to let the allergic reaction thing pass no dizzy.  Aside from that, last night I had a little bit of a cough and today the headspace is a little futzy, but the latter may be lack of food since I slept till kitty alarm went off at 10:30 so I got up and took morning meds and then back to sleep and then up again around 3 for lunchtime meds and finally got some food.  Don't think I'd eaten since about 8 last night.  Sadly tummy gods are angry with me not having a lot of food though they're not showing their appreciation by letting me keep any of it in *grumbles* Just can please anyone.... ;-)

Seriously, though.  Considering all the crazy side-effects one could have from this drug and other than sleepy and a bit of a cough I'm fine, I think part I of round I has been a success.  Just going to keep vegging and see what doc has to say when I see him next Thurs for the follow-up appt.  Incredibly jazzed that we were able to make it through the first part of this.  The nurses had said that if the allergic thing had happened earlier on they would probably have had to stop entirely so I'm glad the benadryl knocked me out for a couple hours.  Chances are I was having the reaction during that time and we just didn't really pay that much attention between the nurses and I cause they'd take my blood pressure and I'd doze back off.  Going to zyrtek-d the night before next time to preemptively strike against the allergies on top of the benadryl dose they'll give me and maybe it'll help when they do the steroid dose again.  *shrugs*  Points for effort.

Now just gotta fight not going back to sleep and hope no more random side-effects stuff creeps up.

*holds breathe*

Hope everyone has a great rest of holiday weekend!!

*HUGS*

*Glade plugins tune* "Plug it in! Plug it in!"

Been jacked in to the Matr... eerr IV infusion stuffs since about 7:30.  Shot of steriod.  Shot of benadryl.  Two tylenol.  And a laaaaaaarge bag-o-Rituxan.  Had an allergic reaction, but Dr P came in and looked at me and said "Yup, see it before.  Pretty certain it's a reaction to the steroid shot at the beginning of the process and not the Rituxan.  Let's keep going."

They had to stop for a bit cause of an nice red itchy rash face issue that started up about 2 hours in.  Held off for an hour just fillin' with me saline and now no more red face.  Started back up on the Rituxan about a half hour to 45 minutes ago.  Being plugged in with the tv giving the news and my feet propped up in a recliner I tend to lose track of time.

Only thing I've noticed so far from the drug itself is that I feel just slightly dizzy.  When we went to just saline none of that so going to attribute to Rituxan stuffs.  Not bad, just a little weird.

So it goes.... With the delay of their having to stop it for a bit going to be getting out a bit later; not sure just how much at this point.  Know they normally close up shop at 3 but I doubt they'll pull my plug and kick me out if it's not done ;-)  Hoping any reaction stuffs happen here.  Would like to be able to enjoy the holiday weekend.

Couple more hours to go.  *yawns*  Wait for it...... WAIT FOR IT!!!!

:-D

Look Arthur! A secret message from my teeth!

Intermittent leave approved.  *whew*  Of course it took calling them and getting hung up on in a transfer and calling back and then getting the case worker lady who didn't sound like she really wanted to talk to me on the phone to get it done... but...... it's approved.  Seems she'd put me on a shelf since two Fri's ago when the doc's office sent in my paperwork and left out the last 6 months worth of appt history.  She saw other stuff came in but apparently forgot that the original rest of the paperwork was already in.  ...  *deep breathe*  Anyways, leave approved.  Though I've using vacation to cover the infusion Fri and on the 16th, FMLA will hopefully make sure the bum end is covered if HR comes back getting angry at my having used up all my time half way through the year.  Nice to know it's there.  Huge relief.

Found out I can take my computer in Fri so while I'm getting pumped full of the awesome + benadryl that will make me looking and/or knock me out, will keep the world posted on how it's going.  I've had IV's before, but 6 1/2 hours seems like a long time to be plugged in and having good drugs run through your system.  Do need to find someone willing to bring me lunch Fri.  Guess I'll work on that tomorrow.  Decided I'm not going to bother inviting anyone along for the adventure only cause I'm pretty sure I'll lose consciousness not long after the benadryl comes along.  No point in someone waiting their day watching me sleep.

Hooray for a good news days.  They said it's good till 12/22ish.  Should get a thing in the mail 3 weeks prior to that for a renewal and as long as I send it in, everything should keep on covering me for another 6 months.  Gotta keep an eye on the mail.

Figure next post will likely either be me all nervous goose-like tomorrow night or I'll hold out till I'm plugged in 7am Fri morning.  Hope you folks have a great rest of week and weekend :-)

"We've sent them a message and they'll get back to you": Now where have I heard that before...

Oh wait.. let me think.  Last Friday :-)  Alas, still no word from Aetna.  The automated system still tells me pending and that they're still needing some kind of authorization form which I know is bs cause they've had all the paperwork they needed since last Tues; called and confirmed that Wed AND Fri when I called to check on the status.  A message was supposedly sent to the case manager then and I was to receive a call.  No call yesterday got me to call and find out their system was hosey.  Tonight I called too late and got the after hours kid who said he would send a note and I would get a phone call.  Just going to have to remember to call in the morning and check on the holdup and not let them let me off the phone till a determination is made.  It's been a week and I was told that they should have a decision no later than last Fri. Yeah... I know... *takes a drink*  But now we're a week after all the paperwork's been turned in and it's still pending and my first infusion is on the horizon; three days away now.  Eesh.  Bossman's still being oober awesome about the whole thing.  I still feel like a goob for asking for Fri off.  It really just hadn't occurred to me that this was the Fri before a holiday :-(  But then again, the two backups I now have for the lab should both be there so SOMEONE should be able to keep an eye on things.  I hope.  Maybe.  Whatever may get fraked up I'll put back together Mon ;-)

*tick tock tick tock*

Going back to calling it an early night.  Today hoovered.  My fault entirely.  Just gotta get back to the same ole grind tomorrow.

The ants go marching one by one....

Got the call from the infusion nurse this morning, A.  Even though Aetna hasn't clicked the button yet (called and their system was down 3/4 of the day and still slower than crud around 2:30 so they couldn't do anything), figured since I'm having to use what time off I have left anyways to make sure I still have full paychecks I would go ahead and let her sign me up.  So here's the schedule: first infusion will take 6 1/2 hours (not 5 as I was previously told) on July 2nd.  Second will be July 16th and take about 4 1/2 hours.

Told to be there at 7am for the first and 8:30am for the second and still pretty much expect to take the day off for both.  Which hoovers much.  But at least I'll still have full paychecks.  This will leave me one vacation day left for C's birthday in Aug.  Must hold on to that last day.

Also informed to eat breakfast before I show or bring it with me as once I'm there I can't move about save to go to the restroom. This means I need to bring lunch with me as well or find someone to bring me grub and keep me company for the lunch hour cause again, can't leave.  I can take medications as normal that day so no change in the regime schedule.  Was informed that they'll be giving me what I think they said was an antibiotic to try and cut down on the chance of a reaction to the infusion as well as benadryl which also is supposed to help cut down on the chance of negative allergic reaction.  Benadryl normally knocks me smooth out the few times I've taken it so not going to bother at this point asking anyone to come with me.  If they've giving be a crazy benadryl dose I'll sleep through the whole damn process and will bring a book with me just in case I do somehow manage to remain conscious.  Only thing I worry about is being awake enough to drive home after cause dude... benadryl really does knock me on my bum.  Worse case I can call J to drive me home and then maybe have him and A coordinate getting my car back to the apt.  *yawns*  Makes me sleepy just thinking about it.

Going to call Aetna again tomorrow to check on status of claim.  Got a call from Dr S's office in allergy saying for me to try taking regular unleaded Claritin to take the place of the Zyrtek-D.  Reminded nice nurse that only things with the decongestant seem to help but that I would give it a try.  Going to go ahead and finish taking what Zyrtek-D I have left, though, at this point cause it's already bought and paid for.  And after my going a little nutty on the groceries at SAMs earlier today, need to stretch every frakin' dime.

It's all going to work out.  It has to.  I give it no choice.