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.
Tuesday, June 21, 2011
Friday, May 20, 2011
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
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
Monday, May 9, 2011
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
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
Monday, May 2, 2011
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.
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.
Thursday, April 7, 2011
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
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
Saturday, February 26, 2011
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.
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.
Friday, February 4, 2011
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.
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.
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