Sunday, October 28, 2012

"Sweet Emotion"

Yeah.  Sweet.  That's it.  I cannot believe how angry I have been lately.  I am not typically your most emotionally stable woman; I PMS with the best of 'em, I cry at that Sarah Mclachlan commercial, I can be a bit moody...but I'm not usually angry.  I have a really, REALLY high patience level and have dealt with some unbelievably crazy stuff with all the patience in the world.  I mean, who can be in the middle of a grocery store, have your client literally fracture your arm in the middle of an autistic outburst, and stay calm and levelheaded enough to know to keep the public calm and away so he can have space to de-escalate, find the cleaner upper people for the flour mess he made, then redirect him to the car, and drive him home, all before seeking medical attention...and I was 18!!!  I honestly deal with things like that regularly and really well...but as of right now, I swear, all it takes is someone to blink in my general direction one too many times and I'm off the wall.

It takes A LOT to evoke anger from me typically.  I was more sad than mad the first two weeks of steroids, although my patience began waning from the start.  Dr. Stone had me double my steroids this past Monday so we're now up to 40mg...and boy have I been ANGRY.  Within the first 24 hours I had concocted a mental hit list.  By day two I was testing out multiple outlets to try and get a grip on things.  And within four days, I had gotten word that a good friend was purposely avoiding me as he couldn't handle it.  Lovely.

I'm not physically mean, I'm verbally mean.  I am not even good at it.  I don't have a quick I just say third grade level insults with a bunch of curse words thrown in.  I've managed to keep most of it behind people's backs, which I think is okay in this case.  And it's all over stupid things!  None of it is rational.  Okay, there are a few things that have been, but I can't really properly judge it all so I'm just throwing everything under the irrational title for now.  The closest I've gotten to physically mean is mentally picturing myself ripping to shreds this stupid book that I can't stand and someone has on display.  I may have thrown in on the ground twice now and I gave him a fair warning that if it's still displayed the next time I'm over, I just may do something to it that I really shouldn't.

After much searching, I did FINALLY find one thing that does help me to get out some of my anger in a safe and controlled way.  Let's just hope this form of therapy is something that can and will be able to continue throughout this!

I have heard from so many people that this is normal and it's been much worse with others.  One friend of mine told me that when her son was on steroids he punched a hole in every door throughout the house and they had to replace them all.  Another mom told me that when she was home alone with him she would lock herself in her room.  I honestly don't think that I will or could ever get to the point of physical violence...I mean, I'm vegetarian because I think killing animals for food is sad...but if I actually got to the point of ripping that book or possibly throwing something, that's too far for me!

Especially after hearing that specific friend of mine was avoiding me, I've been hibernating.  This is something that is difficult to explain.  Difficult to try to apologize for.  Difficult to manage!  The cursing is just out of control.  Rachel and Julie have been AWESOME in dealing with me.  Julie will test the waters with me everyday before opening up into full fledged friend mode just in case I'm having a day.  Rachel blatantly watches what she says or talks about around me just in case.  I hate that I'm scaring my friends into having to tip toe around me, but it's so good to know that I won't be provoked and/or set-up for accidentally being mean!

My Mom and sisters are doing pretty well too which is immensely helpful.  And, Karla gave me the perfect way to help my guys understand when I need my "me time"...explain that I need to give myself a "time out"!  I'm very aware about how much my attitude and overall being effects my guys and the last thing that I want is for them to feel this or have this impact their lives negatively.  I've been careful to promote positive interactions between them and anyone who comes into our home, as well as plan out specific times and things for us to be together and have structured fun...since I know I'm not much fun in our daily lives at the moment.  Karla reminded me that if I phrase it as giving myself a time out, they can see that it is ME and not them that is the cause of my needed break.  They seem to understand the concept and let me be when I tell them I'm putting myself in time out.  :)

In my world I combat anger (and every other negative emotion) with laughter as often as possible.  It doesn't fix things, but it sure helps with most things!  I have been spending a lot of time on Pinterest lately looking for things that make me the pictures with this post are things that I found that not only made me laugh, but seemed to hit home right about now.  :)

Many shopping sprees have been had...all in the name of saving lives!!

"Full Circle"


Stupid steroids.  We're at three weeks now and I've seen no significant changes in my health.  The little rash on my cheeks is still there, the rash on my chest is still there, I still can't swallow, I still can't breathe, I still have heartburn 24/7, I still can't sleep unless I'm sitting up...but now I'm ultra moody too!!  And, I get night sweats!  And nauseous!

Warning: this is gross.  But I am so irritated by it!!  I haven't been able to sleep through the night the past week.  I am constantly waking up in a hot flash and realize that I'm covered in sweat.  Apparently these are called "night sweats" and they can be a side effect of the Prednisone.  It's gross.  And not fun.  And cold.  Very cold.  I have a hard time staying warm these days anyway, but when I wake up wet, I'm freezing.  But it's from sweat?  It makes absolutely no sense to me and I'm highly unamused by it.  But, I don't know how to fix I just get up, change pajamas, find a different spot on my huge bed to sleep, and wash my sheets daily.  (Thank goodness I've got a King bed and I sleep alone...that's essentially four different spots for me to destroy throughout the night before having to find another clean spot to sleep!)

Also, my heartburn has been intense!  Since the beginning of this it's been a daily thing, but typically I can take a Zegrid in the morning and I'm good for about 24 hours.  But for the past month or so it's been really bad.  The ENT told me when he did one of my swallow studies last week that every single time I lay down, anything that is in my stomach backs up into my esophagus.  That little flap thingy doesn't work at all right now.  So, I have to sleep at an angle, otherwise I'm woken up with heartburn.  Well, a bed base that can sit the bed up costs almost $3, that won't be happening soon.  I currently just stack my pillows up but I have a hard time staying on them!  My Mom suggested I find someplace that sells foam wedges and get one of those to prop myself up on.  I think that may be genius and I'm going out hunting today!!!

As far as those moods...boy howdy!!  If I compiled a list of things that have made me cry over the past week it would be equivalent in length to...something that's really long!  Ugh.

In keeping with my picture posting, this is one that I found right after my Seahawks beat Dallas at my first ever NFL football game that I attended.  I love it.  Always brings a smile to my face.  :)

Wednesday, October 17, 2012

"Outta Your Head"

I'm a pansy.  I do really well with some things (blood draws, being shoved in a tiny machine and having to hold still for an hour, going at this whole thing solo, etc.) and I do really NOT well with other things (biopsies, injections, stitches, etc.).  When I say that I do really NOT well, I really mean that I don't do well.

It took three appts before I finally let my dermatologist get the biopsy he wanted.  I have another one that has been needing to be done for over a year now and I'm still saying "no".  I was so proud of myself for not crying or fainting during my biopsy last proud that I hadn't yet thought ahead to the part about the stupid stitches they put in!

First off, I think that SOMEONE in the office should have had the sense to realize that I was such a MASSIVE pansy about the stupid biopsy itself, maybe putting disolvable stitches in would have been smart. Through some miracle, I had gone 27 years of my life without having actual, threaded stitches anywhere on my body.  (Gallbladder and wisdom teeth were the disolvable kind!)  It didn't occur to me how much the thought of getting stitches removed scared the living tar out of me until the day before my appt.  So, naturally, I called and cancelled my appt.  She asked if I wanted to reschedule and I told her "no thanks"!

They looked pretty happy in my chest...all two of them.  I mean, the skin was growing back, they weren't interested in moving in the slightest.  Noelle and my Mom had volunteered to take them out for me, I told them both "hell no".  Rachel volunteered and I actually considered...but then we tugged on them and they looked pretty happy.  A few days later upon finding out this fun, my sweet friend Joelle not only volunteered but searched the place we were at high and low for sterile supplies so that she could do it for me.  Much to my relief there weren't any there.

Last Monday it had been almost two weeks since the biopsy and about six days since I cancelled the removal appt.  After a lot of researching, thinking, and talking I had come up with a plan!  I figured that if I could get clean scissors and cut them down as far as I could get them, then I'd clean it regularly and keep it covered until my skin just grew over my stitches!  If my body wanted to push them out, then it could push them out eventually!  After being advised by many, MANY people that my plan was stupid, I made the executive decision to go through with it anyway!  So, I went to WalMart with Rachel (who protested the entire way) and we bought everything we needed!

We got home, she gloved up, I tried not to look or think about any of it, and she cleaned, trimmed, and bandaged me up!  The following day I called my dermatologists office to ask about the biopsy results.  I was transferred to a sweet woman named Michelle.  She explained some really long thing to me about the results and basically said to come in for a follow up because the dr wanted to talk to me.  Then she asked how my site was doing since the stitch which I had to tell her I had cancelled.  We ended up talking for almost twenty minutes and, after patiently listening to me explain my not-so-awesome plan and much, MUCH discussion...I made an appt to have HER take out my stitches the next day.  She promised to be so very gentle, to use whatever anesthetic I wanted, and to be quick.

The next morning I went into the office.  She was perfect; treated me like a scared four year old, spoke softly and sweetly, and was just overly comforting.  Everything was going fine...until the first stitch came out...and I forgot to breathe...and I passed out.  When I came to the first thing Michelle said was "I got the second stitch out so we're all done!"  That instantly put a smile on my face!  After I started smiling, I realized that no longer was it just her and I in the room but there was this sweet older nurse with grey hair who had a cool compress on my forehead, there was another younger nurse with a cool compress on the back of my neck, and the dr and his intern had made their way into the room while I was out too!

Eventually I got the color back in my face, I stopped sweating, and could see straight again.  I pass out a lot these days and have always passed out when I get scared (because I forget to breathe!) so it really wasn't a big deal.  I drank a bit of juice, apologized profusely to everyone, and was on my way!

As far as the biopsy results go...I can't really remember much about that part.  I know that what he sampled was not Dermatomyositis like initially suspected, but he told me to not let that rule it out.  He wanted to biopsy a spot on my cheek and see what results that brought back.  Clearly that didn't happen.  At least not yet.  He said that my biopsy came back showing some autoimmune related form of folliculitis?  Apparently it's all connected but apparently now it is thought that the form of Myositis that I have is a rare one associated with the PL12 antibody.  Of course.  I had JUST gotten the hang of the pronunciation too!  Dang it!

And here is my little tiny biopsy site that had an entire two stitches yet caused so much fun!  Obviously this is post stitch removal...although I swear my plan wasn't too bad and might have worked!!!

Monday, October 1, 2012

"Train Kept A Rollin'"

Not much to update, but I thought I'd get on and update that there isn't much to update.  You're welcome.

I am on the third day of my pills and the only thing I've noticed is an increase in my hunger.  I'm being absolutely meticulous about what goes into my body at the moment as well as exercising as much and often as I physically can (which, at a moderate walking pace on the treadmill is between 1 and 2 hours a day so long as I don't let my heart rate get about 140 or so, then I start gasping and can't breathe) and I've managed to lose 5lbs.  Trying to mentally prepare myself that it may not be off for good.  I'm sincerely hoping though that if I work hard enough I may be able to maintain my weight?  That may be a pipe dream, we will just have to wait and see.

I have an esophogram and a videofluoroscopy scheduled for this Thursday to look at why I can't swallow thick or solid foods anymore (at least not without the help of a drink) and that will be the last of my actual dr appts for a month or two as my short-term indemnity health insurance plan runs out Friday and the process to obtain health insurance now that I have a pre-existing condition is extremely lengthy.  Thank goodness I've got wonderful drs who have set up plans with me to communicate and adjust things in ways that won't cost me a penny until I am able to purchase health insurance again!  Not gonna lie, it will be nice to get a needle/procedure/appt break for a bit!

That's about it.  When I get biopsy results, above mentioned procedure results, or anything of any significance happens, I'll be back!  Until then, here's a picture of my sisters and I around Christmastime about twenty-two years ago.  (I'm stuck on this "people like pictures" thing and unless someone speaks up, I'm gonna keep posting random, or not so random, pictures with every post!)

PS-I'm not sure who I'm kidding, even IF someone speaks up, I most likely won't stop.  :)