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*

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

Publish Post

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.

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.

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 :-)