I'm angry. Wouldn't you be, too?

So, I went to see the social worker at Wildwood Programs to fill her in on what has been going on.  Trust me, a ton has been happening.  She says to me "Eileen, you seem so angry"  DUH!  These chicks are pissing me off at St. Margaret's Center.  It almost seems as if they take great joy in throwing obstacles in our way.  What benefit would they have to keeping Becca in the facility, besides keeping the population up to justify their staff?  They have made medication errors, and on 3 occasions recently, have either delayed medical treatment to her, or caused a reason for more advanced medical treatment.  So, yah I'm pissed.  I'm spitting tacks mad.  I want to flip out on them.  I won't.  For now.  Once I get my girl home, LOOK OUT bitches!

9/11

The 10 year anniversary of the September 11, 2001 tragedy is just around the corner.  I still have a hard time watching the newscasts from that day. Ten years ago, I had a critically ill husband in the hospital.  We did not know if he was going to pull through and ever come home.  That liver abcess was almost the end of what we knew to be our life.  Michael has the multitude of scars on his body to prove it. 
While he was battling his fever, having a picc line inserted, having numerous CT scans of his abdomen, and generally feeling like hell, I was trying to hold our household together, while running north and south on the highway, from home to the hospital, 3 exits away.
I remember trying to keep some sense of normality to my girls' life.  They didn't miss school, dinner was at the same time every day, then baths and bedtime.  I felt as though I was fighting a battle I couldn't win.
Then there's the phone calls I was making to the mortgage company, and the finance company for our car.  I would explain our situation, and they suggested I call them back when the payments where late.  Um, what the hell do you think I'm calling you for now??  I want to make arrangements BEFORE there are late charges.
I do thank god everyday for Michael's Grandmother.  If it weren't for her financial support, we would have been in ruins.  She sent me money to cover everything.  We were also having to pay COBRA for our insurance.  Ooh, that was fun, admitting him to the hospital on a Saturday, hoping and praying they wouldn't call the insurance company until Monday to verify coverage, because it would show it had been cancelled on August 31st.  Once your'e in the hospital, they can't throw you out due to no insurance.
So, on the 10 year anniversary, I will not be watching the memorial shows.  All the artifacts from the World Trade Center are in the NYS Library, about 5 miles from my home, on display.  No,  I have not attended the shows at the library.  Because the pain is still so real, I may never return to the NYS Library.  I can only handle one tragedy at a time. 

Still trying..

So, I think I've figured out that I feel guilty.  Guilty because Becca is where she is.  I know it's part of the healing process.  It's taking me awhile to get to this.  I feel awful she's there.  I want her home badly.  I was bringing her home everyday for about a 7 day stretch, but it's become too much for me.  It is just like old times.  That sucks.  All she wants to do is YouTube, and she's not had a lot of energy to do much else.  So I end up here at home, not being able to really find any motivation to start any projects, or weeding.  It's laundry, sweeping up the dirt the dog has brought in, mopping up the pee Becca has spilled on the floor, food, hostility, more pee and hey, did I mention Becca's pee??
So, I have left her at St. Margarets for the past two days.  I go and visit her and I pray she is coping.  She's doing pretty well, but wants to come home.  That's ok, I want her to come home, too.  You're not alone kiddo.

So bored.

For fun, guess what I did this evening??  I took a razor blade to the surface of my stove and scraped off all the gunk that has been there since before we moved in here.  It looks brand new.  I, however, are thoroughly bored out of my skull since completing this task. Becca is home today from St. Margarets Center.  The plan is to keep her overnight.  Michael is fishing with a friend, Ali is up in her room, keeping it neat as a pin.  I'm giving Becca a flush right now, then I get to shave her armpits and shower her.  For some reason, no one at
St. Margarets will shave her armpits!  It's annoying as hell to me.  I'm hoping they shave theirs, the women that is, what is so tough about hers?  I have to do it, or it doesn't get done.  This is not what I want to do on a Saturday night.
I really want to do something, anything outside of this house with these dogs that just keep scratching!!!  They do not have fleas, just itchy sensitive skin, and they are making me want to scream.  Or start on my box of wine.  For my adventure today I went grocery shopping.  Woowee.  Then I got all domestic and baked blueberry muffins for Becca, her favorite.  From SCRATCH, no less!  Then I made scalloped potatoes and ham from scratch, too.  I tell you, if I don't get a chance to do something different soon, I'm going to blow my top.  Haven't been to the movies in ages.  Last time we went out to dinner, the girls where at camp, and we went with a couple that have no children and are spending the summer jet setting all over the globe, and they shared with us their spa weekend and how wonderful it was.  YAWN.  WTF did we bother going out with them for?  To spend too much and split the bill when we didn't consume half the food or drinks they did?

I want to get a part time job.  I want to get a full time job, I want to go back to school for nursing, but I won't be able to keep up.  My body is in full flare with my Psoriatic Arthritis, things are very swollen that haven't been in years.  And I'm not just talking about my butt :)  Of course, a med I'm taking has caused me to gain upwards of 19lbs.  I should be about 8 1/2 mo pregnant at this weight.  Somethings got to give, lets just hope it's not as huge as April.

Having the time of my life here.. yeah sure

I miss having Becca home tremendously.  I do not miss the laundry that smells, nor the wet floors from her peeing buckets of urine.  I do not miss her IV care, or her stoma care, or her eating or not eating.  I do not miss having to worry about everything about her, and being the only one that seemed to give a flying fig about her and her condition.  Everyday is a battle for me to keep her at St. Margarets Center.  When will I feel complete as a mom?  I feel like a huge part of me has been removed.  I know, this will pass.  I do not feel guilt for putting her in the facility.  I feel guilty because I don't feel guilty. 
Taking care of Becca was a one sided conversation at all times.  She was often ungratefull and bitchy.  I never wanted her to thank me for changing her diaper or sticking a one inch needle in her chest.  I wanted less gagging, less vomitting, less "I'm FINISHED" being yelled at me.  Rebecca has very little control over her life and what occurs in it, this I know and I can appreciate where she is coming from.  Taking care of her can be a full time job.  Taking care of this big house is a full time job in itself.  Keeping everyone elses needs met is a full time job in itself.  I get very little help from the family members I live with. I am completely disabled and cannot work. The government has agreed with this decree and they pay me an allotment every month because of it.  I still have to do the laundry, make meals, light fires under peoples asses to get them to clean this house.
I want to have my girl home with me.  I am not looking forward to the PCA's and the nurses I will need to have in my home to help me care for her.  I do not look forward to having to keep everyone happy, when no one seems to want to do anything to make me happy.  I have to be the person they bitch at when they aren't happy.  It's as though I am in control of everyones actions at all times, and heaven forbid it's not done the way someone wants.
Tired.  Fed up.  Lonely.  Frustrated.  Disgusted.  broken hearted. 

White Wine is my new friend.

I feel as though life is starting to get a bit out of control again.  I do not have the time, nor the inclination to "talk to somebody" so I will blog instead.  Today I was exhausted and cranky, wishing I could take a nap, but unable to.  I am dog sitting two Boston Terriers, and one is 6mo old.  He's as sweet as the day is long, but a p.i.t.a.  !!!  He follows me everywhere and I usually end up tripping over him.  All the older dogs just know to stay out of the way.  Not him, he sits there with wide eyed amazement at my every move.  Always ready to lick my face when I trip over him on the kitchen floor.  Yeah, lots of fun. 
So, I needed a nap today, I laid down on the couch, and he decided my curly hair would make the best nesting place for him.  I only got so far into my nap when his snoring woke me up.  No nap for me today.  So, I got myself a glass of wine, and now I'm on number two of the wine.  Michael just asked me if I was drunk facebooking.  No, just venting and rambling.  Anyone who knows me knows I tend to need to let loose every now and again.
The admission to St. Margaret's Center for Becca has been pushed off until June 2nd, due to construction issues.  Michael just asked me how often I plan on visiting Becca when she's in St. Margarets.  OMG, I want to say everyday, as my life has revolved around her every day for the last 17 years or so, but realistically, I don't know.  How am I going to make it from day to day without her and her peeing on the kitchen floor, or vomiting at will, or sing songy voice??  I will have to just make do and find Eileen again.  I so wish I could get a job, or even return to Nursing School, but I know I can't do either right now. Things are too fluid at this point in my life.  My brain is two steps ahead of my body, as usual, and my body can't keep up.  I have to find a way to quiet my brain.  I'm still waiting for my foot to feel "normal" since the cryosurgery, but I know it will take a bit to heal.  I want to wear cute flip flops because it's summer, but my feel yell to be put in sneakers with the orthotics and my nice cushy socks.  Anyone who has ever seen my toes will say, stuff them back into sneakers, no flip flops, PLEASE!!!  It's laugh or cry, folks.  I chose to have a glass of white wine and laught tonight.  Be well, and thanks for checking in.  Love, e

Just what is STRESS???

I know there are many different definitions for stress.  It's individual, the results of it for the most part.  I am so tired of the pain I feel when I get stressed.  My entire body tenses up and neurons start firing erratically and the back of my skull wants to pop off.  Finding stress relief is not an easy task.  There are days I wish to just walk until I can no longer walk anymore, there are other days when I want to scream until I am hoarse.  For the most part, I just want it to go the F*ck away!!!
I feel as though I have cleaned my share of vomit and poop.  I have drawn my share of blood from my child's chest.  I have carefully peeled off a dressing, only to apply another right on top of the red, chafed skin.  Poor Becca doesn't get a decent enough chance to be as "normal" as she can be.  She can't do as much as she wants, if she does, her body pays dearly.  She gets so overtired I wonder if she can fall asleep.  There are typically developing 16 year old children out there that purposely put their body through torture, physical and mental.  What does she want?  She wants her picture of Ricky Ullman, her favorite Zucchini Brother's Tee shirt to wear and a niple or two to chew on.  I know, I spelled it with one "P" that's the way she says it.  I doubt the words she speaks in her way will ever sound right ever again to my ears.
Honestly, if a study comes out and says that Clorox disinfecting wipes are bad for you and they are taking them off the market, I don't know what I'd do.  I kill soooo many trees in a week with paper towel consumption it's a crime.  You can only get fabric to smell ok after awhile. 
So, what is this stress doing to our bodies??   I feel like it makes me feel alive somedays and others, I want to crawl back under the covers.  Not today.  Today, I am thankful Becca went to school.  I will be especially thankful if she makes it the whole day.  I am not even counting on the entire week.  One day at a time.  Stinks to live this way, but it is what it is.  Thanks for letting me rant.  With love, e

Boring has left the building......

Feeling battle scarred.  Bad couple of weeks.  BAD.  Bordering on banner low week.  Becca and I are both home from the hospital.  I have so much to say, but don't know where to begin.  There are things that I need to shout from the rooftops, and yet, this is not the correct forum.  I think I will put a lot more in notepad and not on here, as this is public. 
I do want to Thank all my family and friends for their prayers and help, be it, spiritually, financially, physically or virtually.  My family could not have weathered this storm without you all. 
This is just the beginning of something new, a whole new world, as Becca puts it.  She is chomping at the bit, ready to start her new life at St. Margarets Center.  She asks frequently when she is going there.  Ok, it's not like we have two way conversations, or a dialogue, but she'll ask "Blue Alladin St MMMmskd???"   We call it blue alladin st margarets center, and it comes out as a mumble in the end, but blue alladin is clear.  I tell her we need a bed there for her first, then she can go, it can be anytime now, but I don't know what day.  It makes our decision a bit easier on us.  Being exhausted physically, spiritually, mentally makes this move easier on us, also. 
Thank you for checking in.  I will end for now, as this rant could go a hundered different ways, and I'll try to stay on task here.

Pretty much boring.

I don't know about you, but boring can be good.  There have been no hospitalizations for awhile.  We've had some cruddy days, some scary days of "go ahead, throw up again, and we are off to the ER" some days of OMG, she looks awful and is toooo quiet.  Then she goes to bed, and wakes up early and starts in with the singing. We have a follow up appointment with Genetics on Friday at 10am.  I've been taking pictures of her when she showers, to show her feet and hands.  They are dark purple, that is scary.  Her feet and legs look like they are from a 90 year old man with emphysema and fallen arches.  I can get her to pink up a bit by having her take deep breaths, but then she ends up almost hyperventilating. 
Our new handicap accessable bathroom is finished.  It is wonderfully roomy and bright and cheery.  Our living room has been finished also, we lost over 8feet of our formal living room for the construction, but it still looks nice.  There is still more construction that will be done to the house soon, we have to have the sliding glass door replaced, the windows downstairs replaced and I'm hoping the kitchen will end up getting gutted.  I can say this with a smile on my face, as I am now a renter, I no longer own my own home and I don't have to pay for these repairs.  We do a lot of the work here, but it's a labor of love, as the house is a beautiful,older, center hall colonial that has been neglected for a bit.  I love when the furnace acts up, I make a phone call and it's taken care of.  No more worries.  No more fretting about can we afford this?  And the best part is, I can still have my dogs, whether they live with us, or just come to visit for dog boarding or day care.
Went to the allergist last week for testing to see what I'm allergic to, and whether I can do immunotherapy shots to deal with the allergies.  Irony stepped in and said I was allergic to dogs, and not cats like I always thought!  I'm also allergic to every tree and piece of pollen in the great outdoors, but I knew that.  So, I will stock up on kleenex and Zyrtec and wash my hands after I pet or play with my dogs.
I'm fighting off a strong desire to lay back down and sleep some more.  I get so tired of being tired.  I want to be able to do what I want to do.  My mind is going much faster than my sore, achy body will keep up with.  It can really piss me off sometimes.
I'm going to post this and get something to eat and then shower and get out of the house, I hope.  Thanks for checking in.  e

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.

Working towards normal...

So, this is my first blog, and I hardly know where to start.  My 13yr old daughter is having a sleepover tonight with her friend, Kylie.  We made cookies after dinner, then we sat down to watch the movie "Zombieland".  I don't know how normal something like that is, but we all have sick senses of humor, and heck, why not watch it for the 16th time.
I put my 16yr old, Becca to bed at about 8:45pm.  I kept her home from school today, as she was just a little too quiet this morning, even after getting tons of Levo Carnitine in her hydration all day, and another bag of it at night, along with the Intralipids.  I cannot believe how long it is taking her to get back to her baseline.  We may have lost her baseline with all the infections she has had since October.  She tires even more easily than usual and is very shaky on her feet.  If she would lay down and nap, I think she'd feel a bit better, I know I usually feel better after a nap.
Keeping Becca home today threw a wrench in my plans, so I'm really feeling crabby and cooped up.  The anxiety is getting the best of me, and I've taken to watching "House" reruns on TV.  Can't concentrate on reading, can't even concentrate on finishing a task I start.  Michael is working tonight, and will be plowing the storage units tomorrow, most of the day so I'm on my own again as Nurse, Maid, Accountant and chief cook and bottle washer. I so need a break it isn't funny. 
I need to work on getting some kind of respite set up for Rebecca at Northwoods, which is a skilled nursing facility.  I'm to the point where I've tied a knot at the end of the rope, but I'm chewing my own arm off to be free.  I don't know if it would really help me in the long run, sending her there for a weekend, or even a week, as I'd have to explain how everything is done and show people how to do it.  Her ACE is not a complicated thing, it's just not a common thing, and if the skin breaks down there are certain salves to put here and there.  And what to do with Becca's own anxiety, as she pulls her hair out and tears at her skin.  Aye yi yi, just thinking about all this is making me tense.  I've got to end now and go to bed.