Friday, July 1, 2011

"I've got sunshiiiiiiiiiine... on a cloudy day......"

Bout time I updated.  All manners of stuff going on since the last post.  So, without further delay...

Was able to get in with Dr P when he got back.  Don't remember the date; think it wasn't until the week after the hospital/pericarditis "incident".  Had "the conversation" with Dr P about the prednisone factor and my standard unhappiness about it and asking for other options.

Oh!  The Tues before that, went to dermatologist.  Lets start there.  On my right elbow I've been losing pigmentation and hair and even my freckles to the left side of it in an ever widening area for about the last two months.  Hard to describe just how it looks; almost translucent with a reddish/pinkish tinge.  Weird.  Also very smooth and soft now that all the hair's gone and has a really funky feeling to it from its side, not my fingertip side, when i touch it almost like it's raw.  Has been hurting to sleep on.  So as I looked a few weeks ago and noticed it has gotten HUGE since I first noticed it and hadn't been paying attention, called up Dr P's office and showed it to nurse J and she had doc take a look at a pic she took of it and he said go see Dr M.  Well, been about a year so was time to see her anyways for regular checkup and she being ever suspicious, took a chunk out of my arm.  She said it could be one of two things: if you get cortisone shots at any point sometimes about 6 months after the skin around the shot area can have a reaction just like mine OR there's a condition that's not fun that some inflammation patients can get that looks the same.  Thus her taking a chunk out of me to make sure it was the former and not the latter.  Told her I'd had some "tennis elbow" pain I was pretty sure was back in Dec or Jan and doc had given me a cortisone shot in the elbow so thankfully that scenario fit.  Chunk came back neg on the bad stuff so she said to just wait it out and color and hair and hopefully freckles in the are will return.  Whew.  downside, about 6 or 7 days after she took out the chunk I broke the stitches on it and never went back to get them put back in. Going to have an incredibly ugly scar, but it can join the collection of other two like it from the two chunks she took out last year from my right leg when we discovered the inflammation in the medium/large blood vessels causing that funky discoloration.  Happy to report that that's not NEARLY as bad as it used to be.  Isn't gone, but my legs almost look human again ;-)

"The New Plan": So back to Dr P's visit. -1 chunk of flesh and +too much prednisone I head in to share my mind.  Have learned I get a lot further in life in the last few years just saying what I think and dealing with consequences later and accepting I have absolutely no control on how people choose to react to what I say.  Makes being honest a lot easier and with a bit less guilt for doing it.  Anywho, I speak my peace.  Same ole same ole.  Please don't make me keep taking the prednisone.  Please help me find an alternative.  Dr M actually said if I was told prednisone was my only option that I was getting hoodwinked and to insist on other options.  Ok, done :-)

Here's what we determined was the current situation: Rituxan at the last infusion rate kept UCTD pain completely away for about 8 weeks.  Minimum amount of time Rituxan can be administered is minimum 16 weeks from the last infusion date.  Rituxan SHOULD have also kept the pericarditis at bay, but didn't.  Pericarditis symptoms started back up about 3 weeks after the last infusion, but came and went until they came and stayed a few weeks ago when I finally ended up seeing Dr C and hanging out in the ER unnecessarily for a day.  The prednisone DOES keep the pain away on all levels; UCTD and pericarditis.  I took the 30mg/day Dr C told me to for about 3 days.  Then I went down to 20 for a few days then down to 10 then 5.  5mg wasn't quite enough to keep the pericarditis pain away so went back to 10 but the last few days I've got back up to 20 because the percarditis symptoms were starting to get a little worse and was starting to feel the UCTD pain again *grumbles*

Future situation discussion: Go ahead from the July 15th date of my second round of this infusion phase, plan the next one for Rituxan 16 weeks out from there.  If the Rituxan doesn't keep at least the UCTD pain away for 16 weeks, we're going to look at other infusion options *sighs*  We know this works, but we have to have something that lasts at least the minimum amount of time between infusions and Rituxan is 16 weeks.  There are others that are shorter, but they're also not as stout.  Will cross that bridge when the time comes.  Prednisone conundrum - two options: keep taking it and shut the heck up cause it works and just keep adjusting threshold as needed to keep pericarditis away should infusion stuffs still not cut it OR take something else and drop prednisone and hope for the best.  Alternate drug recommended was Arava (link is to generic version). Was supposed to take 10mg/day.  Here's the thing: it's pretty much just an alternative to methotrexate.  Yeah, that stuff that I was taking from Aug 09 to Aug 10 when I finally stopped because enough of my hair had fallen out to where I actually had a bald spot I couldn't hide anymore.  And yes, this medication has the same possible side effect.  ALSO it has the same anti-munchkin issue as the methotrexate; guaranteed birth defects.  Thankfully, IUD is still firmly in place so chances of munchkins are remarkably nill.  But the thought of putting something in my body (again) that could damage any future munchkin I may have the honor of bearing just squigs me out, even if it helps my pain in the mean time.   I did fill this prescription and I did take it for about two weeks.  Stopped about 3 or 4 days ago just because the mental factors of dealing with losing my hair again and botching the munchkin factor, even if it's not a factor yet and may never be, just was too much to deal with in the brainpan.  Reporting no diff between taking it and not taking it pain wise since I was told to keep taking the prednisone until at least getting through the second round of this infusion.  I've pretty much concluded that even though I hate the side effects of prednisone, I will take them over the alternatives.

I'm down 22lbs as of today.  The prednisone is keeping me steady, but I'm watching what I'm eating and how much and in the last 3 weeks, haven't gained anything.  I believe I now have the willpower and the knowledge to eat healthier and eat less.  Also going to kick WiiFit back in (frak you downstairs neighbor, deal) next week once this infusion has had a few days to sink in and settle and hopefully that along with still taking the prednisone will allow me to get the weight loss going again and NOT be in pain.  After second infusion, going to stop prednisone again cold turkey just like last time and go without as long as possible.  When I have symptoms of either the UCTD or pericarditis come up, will start it up again.  Know how much it takes to get ahead of the pain and can steadily lower from there once it's under control to find new threshold.  Prednisone and plaquenil just mean should munchkin ever come along, no breast feeding.  Like the concept of doing it, but just being able to have the miracle of munchkin at all would do me fine.  Rituxan is still a class C drug.  This means no studies have been done on women taking it and having munchkins.  Can still only find the one documentation of one woman who had a munchkin while on it and munchkin was fine.  Of course that was birth; no telling any long term side effects now that it's probably two or three years old since that record.  But here's hoping it's still peachy and didn't inherit mom's UCTD issues *crosses fingers*  Down side to the 50/50 genetics of munchkin having; toss up between what all gets put in from who.  Lots of prayers if I ever get to have that decision and some serious hard thinking on the matter, but right now I would still like to take the chance as the meds I'm on as of this moment, I believe I could still have a healthy munchkin.

Know I have been going on about that a lot since R and I divorced.  There are a lot of factors that keep bringing it to the forefront of my mind.  Mainly him holding me and my condition he refused to try and understand solely reponsible for not being able to provide him the family that I, as his wife, was supposed to give him and the fact that now that I'm 30, this is the same age my mom was when she had me.  Yes, I feel it is somehow my obligation to go forth and populate the world with smart gamer munchkins.  But outside factors sadly always have to be taken into consideration, like health of the momma.  My mom was in pretty good health when she had me and while I was growing up, but with the single mom thing she was working back to back 16 hour shifts at the hospital/nursing home over the years on the weekends so I never really got to do a lot of "family" fun stuff with her cause poor lady was always tired and worn out, understandably.  I don't want to be that kind of mom if I can help it as I thankfully, currently, don't have the kind of job that keeps me ridiculously long hours or requires me to always be on my feet.  That and with the right combination of drugs and sticking to my cardinal rules, I can not be in pain and not let it effect my ability to interact with any future family if I take care of myself.  Yeah, I want a family some day if God's got it in the cards.  If he doesn't? Perfectly happy dying an old cat lady some day with Munchkin (cause we agreed when she was a kitten she has to live forever) and Drusilla.  Life's been rough, but can always get worse.  And tends to, but then thankfully it gets better.  Is just always trying to find that balance that gets things futzy, but learn a lot on the way.

Currently, things are pretty shiny.  L is still barely acknowledging my existence which isn't shiny because I miss our friendship, but back to what I said initially; I have no control over how he chooses to deal or not deal with things and I simply can't stress about it anymore.  Everything outside of our now 'barely even friends' is shiny. Roomie's world got upturned recently in a non-shiny way, but hopefully things will be shiny again for him again in the next few months.  Gaming stuffs has its drama now and then as we're back to a large-ish group, but it always goes back to a dull roar eventually and the gaming awesomeness goes on.  I try to hold on to optimism  but it's not always easy.  Had a hard time last week with it.  Had a really rough Monday.  Broke out that honesty in the most honest message to someone I think I've ever written.  As in, I said everything I was thinking no matter how much it terrified me of how they may react and just prayed for the best.  Yeah, change of shiny outcome was fairly non-existent.  Especially with the content.  I believe I left nothing out and was as completely forward and open as I have ever been with anyone.  A long talk over coffee with my good friend C that night about life, the universe and everything and then finally checked in to see what the aftermath was to my moment of honesty (*laughs* moment... took all day to write and was more like writing war and peace) and all in all, positive outcome.  The absolute LAST thing I expected.  Guess after the last few years, positive outcome is the last reaction I've had to honesty.  Maybe a delayed one later after it sinks in, but never initially.  Concerns were discussed over some of the content, other things were ignored completely and probably for the best.  But still have a good friend out of the whole deal and for that I am incredibly thankful.  It's nice to know there are a few out there I feel I can say absolutely anything to, good, bad and ugly, and still have a close friend after.  I truly am blessed with the friends I have and hopefully the future friendships and relationships I'll make as time goes on with those I'm close to.

Today, life is good.  Not all that came before were shiny, but most were.  What comes ahead is likely to not be shiny, but there will be a balance.  After getting so much out of my head in the last week and finally making a decision on how I want to go about managing my health and determined to stick with it until such time as things possibly change, I almost feel lighter.  Oh, which apparently I am *grins*  To end on a really happy note, MULTIPLE people in the last few days, including ALL of the staff here in the infusion room here today who haven't seen me since Jan ALL commented about how I looked so different and better and healthier and happier and they could really tell I'd lost weight.  I still blush every time someone compliments me.  I'm just not used to them and definitely not used to taking them well, but I really have been making a conscious effort to thank people and not instantly blow them off as just being polite.  Maybe I really am looking better and doing better unto myself and the happiness shows on the outside.  I hope so.  Happy is good when it happens and I like to maintain that as long as the powers that be allow.  Made a lot of hard decisions in a short amount of time recently, but with honesty and faith and God and great friends, I've definitely come a long way in the last two weeks and learned so much about how well things have the potential to turn out when you take the time to identify what you think will make you happy and just go for it and not stress about the consequences until there are some there to deal with; may be pleasantly surprised when there aren't any at all.  First time for everything, but I'll take it as often as I can hopefully get it in the future.

Still lots in the brainpan, but for now it's a quiet controlled murmur that's completely managable.  Will take life as it happens and try to keep as good company as I can through it and keep telling myself for every bad that happens, good will follow eventually.  Just gotta keep smiling and holding hands and not lose faith.  When I'm happy, I have lots of happy leftover to share with everyone else and that just adds more happy for me.  The circle is complete :-)

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