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*

Roll that beautiful bean footage...

Yeah, long time no post.  So much for getting back to updating regularly, eh?  So many things have happened.

"Let me 'splain. No, there is too much. Let me sum up."


 Since Nov....hhmmm... Things didn't work out with M.  No surprise there.  Things have become shiny with L. Hope that lasts.  Daily aching.  Only a couple days of pain to the point where I couldn't walk normally or move normally.  Mostly just sore/achy every day.  Still refusing to up dosage of prednisone to make up for it so have been taking the tramadol 1-2 times a day and am fixing to max out at 3.  Even though I wouldn't have been paid for two days of work in Dec, should have gotten Rituxan infusion then.  Deductible was met long before and it wouldn't cost me what it's fixing to cost me with United Health Care; I miss Humana already.  Alt drug doc wanted me to take to replace methotrexate we haven't discussed yet as I canceled my Jan appt since I hadn't been able to schedule the infusion yet so it seemed pointless to see him before I can at least one.  Also don't want to take the alt drug he offered up to takes it place.  I know I need something.  Hurt more since I stopped the methotrexate but really hoping having this next infusion will help with that like it did last time.  Really should have had it back in early Dec to keep it around 6 months but just didn't have the time off to cover it.  Alas.

Here's what's coming up.  Going to call doc's office tomorrow to see if I can schedule my next appt with the doc for the second infusion date so I'm just having to pay $100 for both infusions and seeing him instead of $150 for it being three separate visits.  I don't even have the $100 to cover it right now but better to owe $100 than $150 I figure if I can help it.  Infusions have been scheduled as of yesterday; finally.  There was some confusion as to how much I would have to pay upfront with the new insurance.  Currently I'm told just like with Humana I'll have to pay the doc's office visit copay of $50 for specialist for each infusion day and THEN there's the down side of a new year and new insurance.  Humana after copay covered infusions 100% after deductible was met.  UHC is only covering 90% after deductible is met.  As it's the beginning of the year, I haven't even put a dent in the deductible.  This means that I'll be getting a bill in the mail for at least the $500 deductible.  Then I calculated based off the cost of the two infusions last July that for the 4 I'll have this year that out of pocket just for those will be around $3500.  ...  The dark pit of financial despair gets ever deeper.  *deep breath*  We'll find a way.  Always do.

The infusions are scheduled for 2/25 and 3/11.  Already got approved for the time off from bossman and our internal tool for a change didn't deny my time off requests when I submitted them; first time for everything.  Called FMLA folks to let them know the dates and they said they couldn't put them in their system this early.  .... If you already know the dates you'll be gone, why would you system be limited to such a short time frame??  Ugh.  So have to set a reminder in my phone and the computer to call them the week before the infusions to get the dates added and hopefully that's not too soon *glares at their stupid computer system*  Just want to make sure that I've done everything I need to to not screw this up.  Will see what I need for rides to/from the hospital when we get closer.  A's wedding is 3/12 in Galveston so going to try hard to make sure I don't blow up on that Fri so I can make the wedding Sat night.  Need to find new place to stay since O&C are going to be coming to A-town for SW.

Huuummmmmm.... *think think think*  Celebrated my 30th birthday.  *stares at screen*  Not sure I'd actually written that out yet.  Looks strange.  Depending on the day I either feel much older than that or a lot younger.  Think I need to do whatever brings about more of the latter ;-)  As they say in the Enterprise theme music, "It's been a long road... gettin' from there to here."  I've learned so much in the short time I've been given so far.  Have come to love and appreciate my family more than I ever thought I could and know that I would not be who I am today without them.  Same goes for the friends who I have been blessed having in my life, even if for a brief moment, over the years.  I believe I take something from every meeting and hope I have given something that will last in return.  I truly believe that we're completely comprised of those that we allow into our lives and though I might be a heck of a multi-flavored rose at this point, every petal has taught me something and when peeled away shows another just as beautiful as the last, advantages and flaws alike.  I saw a lot I wish I could be who I was pre-T.  On some level I do.  I'm still certain I'll never be able to get back to all the qualities and

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levels I was before that part of my life.  But honestly it is the good and the bad together that have helped me learn many hard life lessons and I would not change any of them for the world.  I can only hope that those I have the chance to impart knowledge to take the time to listen, even if they choose not to act upon the advice.  It may be 30 years now, but it seems like such a short time for so much to have happened.  I hope I'm blessed to keep going a bit longer to see what the rest of life and God have in store for me.