Tuesday, June 7, 2011

Welcome to the jungle...

And so the balance continues...

Spent my Monday going between a Rheumatologists office I didn't know (Dr C) as Dr P's out on vacation until today and the ER as he didn't seem entirely too sure what to do with me.  From about May 26th I've felt the pericarditis come back.  I lie.  From about 3 weeks after my second infusion I've felt it.  Off and on.  A bit of pressure in my chest like the world is slowly starting to sit down on me and then.... gone within about 48 hours.  Never really got too bad.  Just... here and there.  But on May 26th it came and sadly didn't go away on its own. Started like it always does.  Hurts to breathe in deep, so breathing in becomes more shallow.  Then it hurts to try and breathe and lie down at the same time, but it isn't too bad just yet so only losing a few hours sleep.  Then step those up half notches every day for the last week and a half until Sun night.  Yes, there was sleep, but not a heck of a lot.  I couldn't sleep on my right side because the pressure on my heart and lungs from the inflammation was too much.  Back was a little better, but still couldn't breathe in too far.  Left side was a bit better than that, thus my few hours sleep when the not breathing in deep without pain thing wasn't waking me up.  Tried face down which wasn't bad but haven't been able to sleep like that since I was a kid so no go.

I know how it can feel if I let it go.  I've honestly already let it go on longer than I would have in the past just because I was being stubborn and stupid thinking it would just go away on its own.  Just like the few times it'd come up since the Rituxan infusion.  Just kept hoping this time would be just like those.  Those, of course, were flukes.  Roommate B pointed out that as I'd been taking the prednisone so long about 3 weeks after going off of it cold turkey after the last Rituxan infusion, it probably took it that long to completely clear my system.  I sadly have to admit that I think he's right.  It was naive of me to think for even a second that it was the plaquenil keeping away the pericarditis.  Stupid even.  But it's what I desperately wanted and needed to believe so that I could convince myself I would never have to take prednisone again or experience it's side effects.  Per usual, God's put me in my place and shown me that I have absolutely no control over my body and what it decides to do or when it decides to hurt.

After seeing Dr C and telling him exactly what the issue was and that I only needed to have two tests to confirm that it was the return of the pericarditis, he sent me down to the ER to get 4 tests run where I spent about 5 hours of my day.  I explained to him as nicely as I could manage that the EKG and chest x-rays never show anything.  They didn't for 10 years before the last two I haven't had to deal with this so why should they now.  In his father stubborn old man voice, God bless him, he told me that things change over time and it's possible something might show up.  Yes sir, you're right, it's possible.  But I know what this is.  ALL you need to do is the ECHO to see right there on the screen the inflammation and fluid inside the paracardial sac around my heart and bloodwork to show my white blood cell count has skyrocketed again outside normal parameters (which it has been for awhile with my starting to feel the UCTD pain in my hands, elbows, feet and knees) and you prescribe me an anti-inflammatory (I begged nearly in tears for anything but prednisone) and I get to go home and take this and not lay down into later Mon night and hope by that point the pressure around my heart has lessened enough to where I can sleep.

Well, he of course has other things in mind.  I applaud him wanting to be thorough, but I'm not made of money by any stretch of the imagination.  Even with insurance, I'm dreading the bills of yesterday when they come in.  And of course, the last test they got on me was the ECHO and sure enough while I was talking pericarditis tech talk with the awesome tech guy running the test (who by the way apparently thought my tech speak on this subject was shiny enough to ask me if I actually worked at the hospital *grins*), there was it.  I told him the two places he would really be able to get a good view of it.  Thankfully, it wasn't awful yet.  I hadn't let it go as far as to where I couldn't lie down at all so most everything you could see was just the shiny bright white from the inflammation, but just there towards the bottom as he maneuvered his picture wand of awesome under my ribs to check out the bottom, that's where the worst of the inflammation normally resides.  And with it being angry more on the backside, it pushes onto my lugs thus leading to the painful to breathe thing.

I really didn't think I would ever have to go through this again.  As mentioned earlier, that was naivety on my part.  When I was diagnosed with UCTD and put on so many different flavors of things until we found something that worked, one of those was keeping the pericarditis at bay.  I had really hoped that it was the plaquenil but deep down I knew better.  I had the Rituxan infusion last July and was able to go from the 15-20mg of prednisone I was taking a day to 5mg as the new threshold and come off of the methotrexate completely; still no signs of the pericarditis so mustn't have been the methotrexate keeping it away.  Then second round of Rituxan end of Feb/early March of this year and my going cold turkey off the prednisone and still not pericarditis symptoms.... for a few weeks.  Yes, I should have mentioned something to Dr P when I started feeling it again.  But when it went away within a couple days of starting, I really thought the Rituxan was going to be able to keep it at bay.  What I don't understand and will have to ask Dr P later this morning is why is it that the Rituxan can replace the prednisone for keeping away all the pain that I have with UCTD (for however short lived it is), but it doesn't seem to remove the symptoms of the pericarditis.  You would think if it's for assisting with inflammation and pericarditis is an inflammation based health issue I would be covered.  Guess that's a mystery for about 4 1/2 hours from now.

Dr C and the ER Doc (nice lady) and my old cardiologist that gave up on me many years ago and sent me to Dr P when he couldn't figure out why my pericarditis kept re-occurring to the point of showing up almost every 3 weeks by the time my UCTD kicked in appear to have had a pow-wow earlier today after x-rays and bloodwork and what not and agreed that I needed to go back on the prednisone to get ahead of this inflammation.  I tried to reiterate to the ER Doc and then Dr C when I got back upstairs post ER the side effects of prednisone that I had and absolutely begged for an alternative.  Apparently there isn't one that's this strong.  Back in the day 800mg of ibuprofen 3 times a day (equiv of indomethicin) would have taken care of it, all be it over the course of about a week to week and a half.  Joy of steroids is they are a heck of a lot stronger and work a heck of a lot faster.  But I keep getting told prednisone is my only option for this issue.  They put me back on it at 30mg for the next two weeks.

And guess where I am and 2:45 in the morning on Tues until now (just about 3:45).  Awake.  Ravenous.  And raiding the fridge.  Thanks to my diet, I have non-crazy options around for late night snacking, but it's still going to cause me to gain weight.  I'm eating more as of right now raiding the fridge tonight and if I make it back into bed, digestion I'm sure is going to be angry at my snacks of a glass of tea, yogurt and 3 cheese sticks.  B went grocery shopping and has all sorts of tastier things to snack on, but I know what happened last time.  The 20lbs I gained in the 1st month I was on prednisone in May/June 2009 I just got off from mid-April 2011 to June 4th 2011.  It took me two years to lose those 20lbs and not even a week after I'm back on prednisone and feel like I'm starving in the middle of the night.  And thanks to the cardinal rules of though shalt not go to bed hungry lest ye be in pain, I've got that going on too.  I didn't want to eat more before bed even though I could feel it.  B in his awesomeness let me borrow some pillows and a quilt and building a soft ramp that I could sleep on trying to keep me elevated without sitting straight up or lying flat.  I could still feel the pressure when we were done, even after the 30mg's of prednisone around 5pm Mon when I finally made it home, but not eating has caused my legs to be angry something fierce.  And since I'm already on the prednisone, I can't take anything but more prednisone to try and help with the pain.  Welcome to my vicious cycle.

At nearly 4am, I'm wide awake writing up my last 24 hours still hungry, still hurting, and feeling rather devastated about being back on the prednisone.  Talked with B about my history with the pericarditis condition earlier in the evening (thanks for the shoulder and sorry about the snot) and I told him that when I had the first Rituxan infusion and found my new prednisone threshold that J, Dr P's nurse, told me that in the grand scheme of things if 5mg's was my threshold, it wasn't going to be that bad for me over time.  ... I just know what this drug does to me.  The side effects are awful.  And I JUST lost all that weight and with the chest pain, it's not like I can go for a walk; can barely make it up the 3 flights of stairs or even off the couch to the kitchen without having to stop and try and slow down my heart so I can breathe until this inflammation goes away.

Maybe there's an alternative to the Rituxan that will cover both the UCTD and the pericarditis.  Maybe I'll be stuck having to do both the Rituxan and the prednisone at a low dose forever.  I hate pills.  I hate drugs.  But unfortunately they're the only things that let me feel "normal".  That let me feel a world without pain.  I try really hard to stay optimistic, but I find I continue to fail a lot.  Told B earlier that I know we're always told that God has a plan, but I sure wish he'd get the big reveal on for sooner than later.  I really do feel lost.  Yes, I have many many many things to be appreciative of as there are so many out there with worse conditions than my own.  Heck, one nice lady I know from my old church back home has been battling cancer a really long time with crazy chemo stuff of awful and so far has come out on top and I have faith God's going to keep it that way for her.  I never want to imagine having to go through those kinds of levels of chemo; my infusions of the Rituxan and having gone through the methotrexate injections are plenty.  But by golly... I really wish I knew what I'd done to make the poo list to spend my age 18+ years in constant physical pain without the help of drugs.  I really am sorry, Lord, for whatever I did to piss you off.  Glad I'm not really having to burden anyone else with this right now.  I know L would be here for me if things had turned out different, but I hate anyone seeing me in this state.  Even embarrassing having B the roommie have to see me break down in tears earlier.  I just try so hard to understand it all and with all my 12 years of experience going through these inflammation based issues... I still can't seem to get a handle on the emotional side of it.  It's still hard to accept that these are conditions that will never truly go away, they'll just be masked as best we can with drugs the rest of my life.  Guess it means I'm never moving out of the Austin area because I never want to have to explain all this to another doctor somewhere else in the future and have them decide what's working isn't the best course and start me all over again.  Really couldn't take that.  Good thing I like it around here and have awesome friends who support me when I let me and sometimes even when I don't.  As much as I try to handle all this on my own, I know I can't.  God + Friends = Awesome Support Network.  Is just a matter of my being able to let go of the emotional side and share; I truly do hate being a burden and I can't even get rid of that feeling when I directly talk about this stuff to anyone.  For whatever reason God gave me this to bear on my own and sharing seems like I'm trying to divvy it out and folks already got enough issues to deal with without worry about me.  The conditions themselves aren't going to kill me; just makes you want to not exist every now and then when they're at their worst.  As of right now I can still move and breathe so we're far from our worst.. least for now.

Appreciate the digital world letting me ramble.  As I said in the beginning, that is what this is for.  So that I only burden those who choose to take the time to read this and listen to me ramble.  Venting all this here helps me not bombard everyone elsewhere who could care less about what's going on with me medically.  Not the kinds of things you normally want to share with the world anyways I suppose.  I for the few days a year there's absolutely no pain, I absolutely must learn to enjoy them to the fullest.  Go swimming or something... play lots of bass on RockBand and hopefully have lots of smiles and laughs and good stories to tell and maybe some more to make.  It's easy to get lost in the dark void of pain.  Must really try to keep a firm grip on the rope that leads out and take advantage of being let out of my hole when I can.  There's so much I've missed out on since I was 18 and even more since Feb 2009.  Never know how long we've got here so I guess I need to start making the most of it once we get this meds thing figured out again.

Hope all of you are resting soundly, my friends, and thank you for being awesome and really hope the world treats you well and allows you to live life to the fullest, as they say.


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