How do I hate thee, Mito... Let me count the ways....

So, I've been PMS'ing.  For probably the last 12 years or so, by the feel of it.  Becca has C Diff.   C Diff is short for Clostridium Difficile.  Just the second word alone should give you an idea of the extent of this new infection.  Difficult.  BLECH!  She's got colitis from an infection from the antibiotics she's been on.  So, what is the treatment?  MORE ANTIBIOTICS!!!  Yipee, SKIPPEE!!   
Holy Crow, I'm so sick of IV's and keeping track of what is coming and going and what's due and how much Heparin we've got on hand, and whether or not it's 10mg per ml or 100mg per ml.  I'm more of the "we have 36 yellow caps left"  It's so hard for me some days to keep a grip on what I need to.  I know I need to shower more frequently, I need to make better, more well rounded meals for my family, I've got to keep up on the laundry, I've got to keep an adequate ammount of dog food, cat food and cat litter in the house at all times.  I've got to remember to buy a giant package of paper towels and a 3 pack of Clorox Wipes when I get to Walmart tomorrow, for the 5th time this week. 
I know, I don't really make my life any easier, I'm still trying to take in clients for my dog sitting business, but, hey you know, it's good to have extra cash.  Of course, it means another soul that wants me, me , me to pay attention to them.  I love my dogs.  They are all my babies, whether they live here full time, or just come to stay every couple weeks for a few days here and there. 
I want a reason to get dressed Monday through Friday.  Not just because we have an appointment at Albany Med., either.  Which we do have on Monday.   With Infectiouse Disease.
I wonder if we are on the right med at this point for her infection.  Poor Boo Bear has some really bad cramps and every time I hang an IV bag of Flagyl, she's having horrible runs.  It seems as though once we started treating this infection, it made her more miserable. 
Rebecca had  Community Habiitation today.  That is a new word for Residential Habilitation.  Basically respite for me, but with goals.  Becca has two workers, Mark and Michelle, that take her out and about in the community and help teach her things she won't allow us to teach her with.  Great.  Peachy.  Awesome.  Bye, Bex, see you later, have fun with Michelle.  Yah, right.  She barely made it 2 hours, and Michelle texted me to let me know she *Becca* had wet her pants through to her boots.  Ok, come on home.  OY!  Not only did she pee, but her belly is in high gear, pushing stool out  of her stoma for her ACE, at record speed.  So, it's not like I can ask or expect anyone who gets paid to change her and clean her up and keep her out and about.  I got an hour, maybe 90 minutes today for me.  That is including my shower, washing my mop of hair and drying it, going to the grocery store and ordering a pair of RX sunglasses. 
I should be glad I got what I did, I know. 
So, Michelle brings her home, urine covered, smelly and exhausted.  They ate and went to a book store.  How can she be so tired?  Then Michelle tells me how Becca was falling asleep in the car on the way home.  Oh, that makes me so sad.  I feel like Becca has been short changed when it came to abilities as it is, and now the fatigue is kicking her ass.  She lays down on the couch on a regular basis.  There are times I do a once over on her and I wish I had some Oxygen on hand, because she looks like hell.  Why Becca?  That sweet, chubby little girl hasn't a mean hair on her head.  Devious and funny, yes, but mean, NO WAY!  All I wanted was a baby.  Did I pray too hard to conceive her, did I test fate by taking Clomid?  I know, it's just life.  I'm tired, worn out and burnt out.  I will always do my best for Rebecca, she deserves no less.  I feel like Alison and Michael need a bit more from me, but I've got nothing left.  Should Eileen get anything?  Even my dogs are asking for more from me and I want to tell them to take a number.
So, Mito, you stink.  You have torn apart many families.  I will not let you get mine.  Please be kinder to my Becca Boo, she's a sweet soul who just wants to sing a song and be happy.

So, now what?

Lately, Becca has been in quite a bit of pain.  I have no idea where the pain is originating from or how bad it is.  She gets this crease in her forehead over her right eye whenever she is in pain.  I noticed it first when she had her ACE procedure done, pretty major abdominal surgery, so it was pretty major abdominal pain she was in.  Becca is not the kind of child to tell you "I've got a headache", even if she's got a roofing nail stuck in the top of her skull.  She's got a pretty high threshold for pain.  She usually picks her cuticles till they bleed, and rips at her fingernails, chewing them down to nubs.  Often she will chew them too short, and they bleed.  You and I know that hurts.  Doesn't affect her.  So, that's what is on my mind this month.  Pain.  Where.  How much.  Why.  What can I do?
As many Mito mom's know, Pain is an added "bonus" to the disease.  Frequent migranes are common, generalized abdominal pain, specific abdominal pain, joint pain, oh it just stinks.  How do I address this?  Do we start medicating her to keep her out of pain, or do we run more tests to see what is paining her?   Becca has been through so very many invasive and non-invasive tests and procedures, that I am in no hurry to put her through anything else.  When Rebecca is in pain, she's a brat.  A screaming meemee, ranting, raving lunatic, stomping around the house.  It kills me inside.  It makes everyone in the house look like they just saw the Loch Ness Monster go cruising through the living room.  They all have this big eyed, stunned look on their faces.  Why must I keep it all together?  I just want to hold her in my arms and comfort her, like I did when she was a baby. 
So, do I medicate her, make her a drooling, blank stared, slack jawed zombie?  Or do I let her suffer, and we all suffer with her.  That is the million dollar question of the day.