Who will save your soul...

It goes well. *knocks on self* Don't get to say that often and the few times I've let that slip out, really bad things have followed to balance out the comment. But for now, hopefully it's safe to be honest and say it goes well.

Been mostly in remission 16 months now. The mostly is because any time I get back into my non-paleo-like eating habits, the inflammation pain returns very slowly and then gets angry. I normally wait to head it off more towards the angry point and try to ignore it until then. My stubborn streak hasn't changed. My finances are getting better, though, so that helps with the paleo cost. Biggest issue is I'm lazy when it comes to cooking; something I personally need to make a much more drastic effort to fix.

But when I stick with it, things are consistently shiny. Pain is near non-existent and only when it gets really cold or drastic weather changes do I feel anything at all. Considering it was in the 80's today and 50's tomorrow, have a feeling tonight and tomorrow are going to suck bum. It goes with the territory, though. And it's minimal and I'm happy to live with it as long as the constant daily pain stays away.

Strongly considering learning to fight again, but this time with live steel. The stage combat stuff has been put on hold due to lack of a teacher with time. Have joined up with a Viking reenactment group who are full of incredible win and awesome. Currently I'm considered a member of the Hearth, but at some point it would be nice to get back to being a Warrior. Just got to make sure I don't jack up my elbow again.

Yup, it goes well. For the moment I'm in a happy place in a lot of aspects in my life and I have to just keep praying that continues to last as long as I can hold on to it and be as prepared as one can to let it go if that's where the path leads. Still one day at a time and trying to make every day as shiny as possible.

Hope this finds all of you out in the interwebs doing well.

*hugs*

It's been awhile...

Have a feeling looking back I say that a lot. Taking the time to empty out the brain pan and let it settle is something I should do more often here yet always find myself running around and making excuses not to. I will try to work on it. I realize Yoda says "Do or do not. There is no "try".", but try is what I'm currently willing to put up to the table in hopes that life get back to a dull roar at some point.

Of course I've never minded the noise, but on occasion it would be nice to just have some quiet moments of reflection *smiles* Points for effort, at least.

State of life, the universe, and everything: It still goes. Hmmm... perhaps that's too short. A bit of elaboration is needed. It still goes... well? In general, that's true. I'm still sad about drama from last June that has kept one of my oldest friends from speaking to me and splintered my group of friends; truly hope and pray that resolves itself. Not going to say "sooner than later", though that is my hope. I just really do hope that it resolves itself at some point; any point even if it's later would be better than not at all.  Health stuffs.... *sighs* Holding pattern. Which I suppose with this flavor of condition is to be expected.  Meds haven't changed since the last time I posted. Prednisone is down to 3mg/day; mininum I can take without constant pain and risk of the pericarditis flaring up. Could be worse, so I'll take it gladly. Infusion coming up in a few weeks. Minimum amount of time in between is still 4 months and it's sadly just not enough.  Next meet-up with Dr P and we'll see what other options we've got out there.  As the infusion starts to wear off and my body starts to boost my immune system again, it starts to rebel against me.

B brought it to my attention the other day something I hadn't even thought about: everything I do that helps "boost" my immune system is wearing off all the things I'm taking to keep it lowered that much faster.  Exercise. Eating/drinking things that are healthier to help boost it.  Sex. Every one of those things and I'm sure more are combating the meds/infusion I take that are trying to intentionally trash my immune system to stop attacking me.  When he brought this up I just had this clear vision of an incredibly vicious cycle.  The more I do to try and better take care of myself the more things I have to take to counter their effects. I just boggled about that for a bit. Still do. It makes me question why I bother trying to improve on all these things healthy folks improve on if it's just going to hurt me more in the end. Color me confused and feeling more than a little lost.  I know I'll "feel" better on the short terms (few days) eating better and getting my exercise on with the goal of losing weight to take pressure off my joints and muscles, but all that work is boosting my immune system which is just going to attack me harder the better it is leading to more pain to where I can't do things like exercise until I can get the pain under control again.

Yup.  *boggles* is the word for it.  Something else I guess I'll bring up with Dr P here in a few weeks.

On happy front news, B and I have been officially together 8 months as of Feb 27th. Not long I suppose in the grand scheme of things, but the time together so far has been awesome. I've found so much support in him on all fronts that I just didn't know it was possible to put that much incredible person into one body. He keeps me honest on taking care of myself as much as I can (even if I'm grumpy about it) and helps take care of me during the moments when I find I can't. I really am truly blessed.  Happy isn't a strong enough word. Truly hope and pray this trend continues :-)

I find myself in any spare time I have rummaging around through fb and the interwebs finding bits of happiness and wisdom to share with the world. I guess I try to be a conduit for which others might find something to make them smile, perhaps help them gain wisdom or insight or on the lucky rare occasion, brings inspiration. My fb world is incredibly random, but I love sharing the bits of the world I find with others hoping that even just once they'll find something positive they have take away from it and go share with their own world. Perhaps I'm being a little too "Zen" about it, but I truly do believe we are made up of everyone we've ever had any contact with; physically, socially, digitally, etc.  I think this is what makes us unique.  We really are snowflakes *grins*  And with this compilation of our "touches" of others throughout our lives and all over the world, we are stronger and wiser and able to take on anything life brings us and can help others do the same.  I sometimes imagine a painting of myself compiled of every person I've ever had contact with and wonder just how "colorful" I would be or what shape I would take on *smiles*

And no, I haven't been smoking any of the "good" stuff. Being hold sick today with what seems to be a sinus infections has finally given me one of those rare "dull roar" in the chaos moments so thought I would bring folks up to speed.

Life isn't always as shiny as I would like it to be, but it's still pretty darn shiny and I'm happy. Currently, can't ask for more than that.  And if I can ever get back to better than breaking even on the shiny I look forward to sharing the excess with others :-) Now back to my regularly scheduled strawberry halls chewing and funk getting-rid-of....ing.  :-D

*hugsNlove*

"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*

Some random early morning bits-o-info

Got a call today (well, yesterday at this point) from Dr N's nurse who told me that the bloodwork came back and though the B-12 is showing within the normal range, apparently it's juuuuuuust barely in normal and the barely is on the low side.  Doc prescribed having me take 1mg of B-12 once a day.  Guess we'll see where this gets me.  He believes it should help.  I don't even know what a B-12 does.  Think I'll put that on the list of things to look up later today.  Nurse also told me that Dr N talked with Dr S in allergy who as expected, wants me to pay $30 to come in and talk about alt options for helping with allergies that doesn't involve the zyrtek-d.  Politely told the nurse I'd call Dr S's nurse and tell them I can't afford to come in to talk and would like to see what the options are over the phone or I'll just keep on trucking with the zyrtek-d.  Adding them to the list of folks to call today.

Still no word back from Aetna.  No call by lunch and I'll give them a buzz and see if I can get the 411.  OH!!  Heard back about the chest x-ray.  No alien much to my disappointment, but as it's clear insurance has cleared me for the Rituxan.  Only thing I'll have to pay out is another $30/visit as if I was seeing the specialist.  Could be muuuuuuuuuch worse.  Supposed to get a call from the infusion nurse to set up my first round; going to delay setting a date till I know I'll have the intermittent leave to cover my appts/tests/whatever for the rest of the year.  If it gets rejected, all this gets delayed will Jan when time resets.  Still pretty stressy about having TONS of time off beginning of May before my cruise and now only having a few days total between PBA and vacation :-(

Green Sorsha needs full paychecks badly!

Good news is a wonderful lady, K, helped me with my resume today and I might be putting in for a project team type job if my luck holds in the next couple of weeks.  Even broke it to bossman of awesome today that there was a chance of my looking elsewhere and though he was bummed at the prospect of losing me, he was also super excited about my getting to move on to greater things and even offered to go through some mock interviewing with.  In case I haven't mentioned how awesome my boss in recently, he's pretty darn spiffy and goodness am I lucky to have him.

Though my time may be short and it may be the one thing that kept me from getting the Exceptional rating the last two years on my reviews, hopefully new future bossfolk will see past that.  Yes, the health gods aren't currently with me.  However, they should be soon.  HOPING that after the follow-up appt after the second infusion of this first round of Rituxan follow-up appts with Dr P should be MONTHS in between; I'm hoping one more in the fall and then another when we hit the 6 months in Jan.  Means the only other appts left are the crud neurology wants me to get done and a follow-up appt with them.  Then.......... *knocks on self* may it will be quiet.

Here's hoping.  Needing to be oober shiny come Aug/Sept for more than a few reasons/people.

*checks time*  Yup.  Just about 2am.  Alarm goes off at 6.  May be Fri, but gots stuffs to do.  Poor lab is in a state of chaos that's likely going to take the whole frakin' day to pull out of.  Once done, though, should be shiny.  At least till I head out for more software testing or if I'm lucky, to help head up some of it with the other project team folks.  *crosses fingers*  Even if there's a pay bump, that part's really not that important to me.  Will be nice to get into a role where I really feel I can contribute.  Any extra pay is just icing that lets me pay down the leftover R debt faster and get back to getting back to college.  Points.. for... effort....

*hugs*

Sleep well folks.  Hope everyone has a great Friday and weekend!!!