Thursday, December 19, 2013

Merry Christmas!  It's a beautiful snowy day I've been enjoying with my family at home.  I was supposed to travel to SLC for a thyroid needle-biopsy and as seems to happen way too often, a snowstorm got in the way so I've had to cancel!  

In October I was able to go through my one year testing post BMT.  All tests came back looking great, I even received the compliment from my doc that the blood results were perfect; better than his would be even!  A nice compliment to hear for sure!  

The only speed bump I hit was in my PetCT- the two nodules on my thyroid had grown instead of shrinking, and there was the beginning of a third nodule/bump/cyst/lumpy thingy that was suggested I get biopsied.  Of course, I've run into rescheduling problems, a doctor quitting and having to schedule with a new doctor, and now a snowstorm, so the biopsy is scheduled for January 2nd.  

I'm a little grumpy about the subject of my thyroid… Back in January I came down with a light case of GVHD and fatigue (yeah, that's only maybe two or three posts back… sorry!), I was put on prednisone and over the following 6-9 months I gained FORTY FIVE pounds, and had about zero energy even with the steroids, and continued to have joint pain.  I was told repeatedly that I shouldn't have joint pain, the weight gain was normal, and I just had to wait until I went off of prednisone.  I was also criminalized by several doctors who thought I was abusing pain medication because I "shouldn't" have pain in my joints.  That's a long story though, and one I didn't want to tell because I was angry, and therefor caused a reticence to post an update.  Well guess what??  As soon as we found out I was very much hypothyroid and I started Levothyroxine (thyroid replacement hormone) I lost over 15 pounds in 2 months and all joint pain vanished, and I had energy!  I was able to quit my "abuse" of medication almost overnight!  Funny that.  And now we come to the BUT.  There's always a "but," right??  I really really hate the "but."  After almost two months of thyroid replacement hormone I started having crazy anxiety, sweating, fatigue, and other generalized craziness.  I can't even take 1/2 of the smallest dose of Levothyroxine without feeling all these symptoms of HYPERthyroidism.  Even though my blood levels say normal and my doc told me today over the phone that there's no way the medication is causing this and it's probably an underlying condition I need to get checked out.  Huh- interesting then that when I don't take the meds I don't feel crazy, but (and there's that dang word again!!  I feel like I should be able to make some childish joke here about buts and butts… BUT I can't think of anything witty at the moment!) And where was I?  Yes, BUT, when I do take my medication I feel crazy all over again- crippling crazy.  So… back at square one I guess.  Oh yeah, the joint pain and fatigue are back too; I've only been off the replacement hormone for a week!  

I feel terrible posting all whiney stuff on here.  And I know, I'll have some people thinking I should be able to tell it like it is, right? Among others thinking I'm alive aren't I, so shouldn't I be happy about that?? Or maybe that's me getting down on myself…  I'm a positive person though, I really dislike being angry, feeling helpless, and being depressed about the never-ending crap.  Yes, crap.  It's kind of an all-inclusive word.  Crap I get from others who think I look fine, I don't have cancer, so why am I so flaky??  Crap around the house- I never was a good housekeeper, and now my housekeeping is non-existent.  Crappy motherhood- I don't have my kids signed up for anything other than school because it's too difficult to do anything other than shower and get through the day in a haze.  I'm crap for a wife too- sorry Honey, I know you hate hearing me "sell myself short," but we both know it's true!  It's not like Adam isn't busy enough with a relatively new job he's tackling daily- it's not much help to have to do everything around the house too!  Do you know our cars still have New Jersey plates on them??? It's been a whole year!  And because the cars are in my name, the plates just haven't been changed.  Well this is embarrassing… BUT, whatever!  Yes, I'm bringing back the "Whatever!" with a big W!

It's actually therapeutic to write all this out.  I should probably go back and delete that last paragraph… BUT I won't :)  That's the kind of behind-the-scenes stuff most people with serious illnesses go through I think.  I really truly am happy to have this extended lease on life, and grateful to be able to spend everyday with my beautiful family.  I look around me and see this amazing valley I live in- the mountains, the people, the small towns… And I'm grateful for it all.  BUT, I can always hope for better!