Emily finds it really hard to tolerate water against her foot, even the air from the ceiling fan sends her through the roof so between baths I wash her hair in the kitchen. She doesn't like it but it makes her feel really fresh after.
Wednesday, December 12, 2007
Tuesday, December 11, 2007
I'm frightened
I checked on Emily throughout the night, she finally woke around lunchtime. It's been a while since I've seen her that pale but she smiled at me when I stuck my head round the door.
I did my best not to smother her today, I want to, I want to wrap her in soft fleece and hold her on my lap all day but instead I asked her to wash, cath and dress. She ate a small breakfast and took her antibiotics and we discussed our plan for the day. She moved slow today but I don't care as long as we have movement. We cant go back to last year where she had contractures in her leg and foot.
I was fragile today, no sleep and the thought of my child hurting so badly makes me really tearful. I tell myself that everything will be ok, I do my best not to focus on past events, I try my hardest not to be negative but oh my god when you've seen what I've seen what are you supposed to do? When you've held your child for 18 hours straight without a break and they're in total agony what do you do?? I hate myself myself for having a feeling of dread, I know it doesn't help and I punish myself for it.
I'm frightened that Emily will go back to that total agony everyday and I'm frightened that her RSD is going to spread further. I'm scared that my family will fall apart and I'll lose control of everything again. That Tom will be pushed to the side and that the financial pit that we continue to find ourselves in will swallow us because of the medical bills. I just want everything to be ok. There, I said it. I just want Emily and Tom to lead a normal happy life. Is that so wrong?
I did my best not to smother her today, I want to, I want to wrap her in soft fleece and hold her on my lap all day but instead I asked her to wash, cath and dress. She ate a small breakfast and took her antibiotics and we discussed our plan for the day. She moved slow today but I don't care as long as we have movement. We cant go back to last year where she had contractures in her leg and foot.
I was fragile today, no sleep and the thought of my child hurting so badly makes me really tearful. I tell myself that everything will be ok, I do my best not to focus on past events, I try my hardest not to be negative but oh my god when you've seen what I've seen what are you supposed to do? When you've held your child for 18 hours straight without a break and they're in total agony what do you do?? I hate myself myself for having a feeling of dread, I know it doesn't help and I punish myself for it.
I'm frightened that Emily will go back to that total agony everyday and I'm frightened that her RSD is going to spread further. I'm scared that my family will fall apart and I'll lose control of everything again. That Tom will be pushed to the side and that the financial pit that we continue to find ourselves in will swallow us because of the medical bills. I just want everything to be ok. There, I said it. I just want Emily and Tom to lead a normal happy life. Is that so wrong?
Agony
Just a really difficult day.
I met with Emily's VP at school today for a chat about how we can help Emily go forward. It's been decided that she needs to go onto home bound schooling. Keeping the routine of daily life is very important for RSD patients so I'm not thrilled that Emily will no longer get the stimulation of her wonderful school but I know it's by far the best thing for now. I feel that Emily puts pressure on herself and that unknowingly so do the teachers. Of course they do, it's their job and Emily's teachers are just concerned that she's falling behind. Being home schooled for a while will actually catch Emily up but without the stress. We checked Em's grades and she's actually doing great on the work she can get in.
Emily's pain level has been up at a 9 for the last week and she's reaching the end of the line. I've been watching the barometric pressure change and the temperature fall and this has triggered a flare. I can only imagine how she feels with a constant throbbing, burning pain in her legs day and night. Tonight she reached panic mode. I could tell it was coming. Back were the tell tail signs, the rocking, the fidgeting the rubbing of the leg constantly, the pale face and the look of sheer panic in her eyes all sign I dread seeing. At 8 o clock she finally came to me and asked me to admit her to Cooks. Knowing what I know about Emily's fear of hospitals I took this as a massive cry for help and took action. I had been trying various things thought the day but nothing worked.
It's almost 2 am and the last 4 hours have been spent trying to find a comfortable place for Emily to lay. A position that she can maybe catch a little sleep possibly with reduced pain. We've medicated, creamed her legs for hours because sometimes FIRM massage helps, we wrapped her legs in fleece then covered them with a heated blanket. I distracted with TV, singing, chatting, guided imagery, hand massage, reading, music and hair stroking until a highly medicated Emily fell into a drug induced sleep.
Do I take her to the ER only to have them keep us waiting and not know what to do. Would our Neurologist be on call because if not it'll be a waste of time. Should I watch her all night in case she reacts badly to the medication that she's been off for a while. Will she wake up screaming, will she wake up? Can anyone ever truly help us ...
Back to that sick in the pit of your stomach feeling, back to the desperation and despair and back to the worst feeling of helplessness that you'll ever know. Am I supposed to sleep now? How can I sleep knowing what I know? Instead I write here in the hope that typing my thoughts will empty my head enough for me to keep going.
Tomorrow I start making calls to try to get Emily into Dr Shelly's hospital in Pennsylvania. I know the waiting list is long and the expense is high but I think we need to go.
I met with Emily's VP at school today for a chat about how we can help Emily go forward. It's been decided that she needs to go onto home bound schooling. Keeping the routine of daily life is very important for RSD patients so I'm not thrilled that Emily will no longer get the stimulation of her wonderful school but I know it's by far the best thing for now. I feel that Emily puts pressure on herself and that unknowingly so do the teachers. Of course they do, it's their job and Emily's teachers are just concerned that she's falling behind. Being home schooled for a while will actually catch Emily up but without the stress. We checked Em's grades and she's actually doing great on the work she can get in.
Emily's pain level has been up at a 9 for the last week and she's reaching the end of the line. I've been watching the barometric pressure change and the temperature fall and this has triggered a flare. I can only imagine how she feels with a constant throbbing, burning pain in her legs day and night. Tonight she reached panic mode. I could tell it was coming. Back were the tell tail signs, the rocking, the fidgeting the rubbing of the leg constantly, the pale face and the look of sheer panic in her eyes all sign I dread seeing. At 8 o clock she finally came to me and asked me to admit her to Cooks. Knowing what I know about Emily's fear of hospitals I took this as a massive cry for help and took action. I had been trying various things thought the day but nothing worked.
It's almost 2 am and the last 4 hours have been spent trying to find a comfortable place for Emily to lay. A position that she can maybe catch a little sleep possibly with reduced pain. We've medicated, creamed her legs for hours because sometimes FIRM massage helps, we wrapped her legs in fleece then covered them with a heated blanket. I distracted with TV, singing, chatting, guided imagery, hand massage, reading, music and hair stroking until a highly medicated Emily fell into a drug induced sleep.
Do I take her to the ER only to have them keep us waiting and not know what to do. Would our Neurologist be on call because if not it'll be a waste of time. Should I watch her all night in case she reacts badly to the medication that she's been off for a while. Will she wake up screaming, will she wake up? Can anyone ever truly help us ...
Back to that sick in the pit of your stomach feeling, back to the desperation and despair and back to the worst feeling of helplessness that you'll ever know. Am I supposed to sleep now? How can I sleep knowing what I know? Instead I write here in the hope that typing my thoughts will empty my head enough for me to keep going.
Tomorrow I start making calls to try to get Emily into Dr Shelly's hospital in Pennsylvania. I know the waiting list is long and the expense is high but I think we need to go.
Sunday, December 09, 2007
A long week
The whole family has been in major upheaval this week with the start of Pete's new business venture. My life was stressful before that this week it's reached a kind of lunar stress that almost blew my head off.
Emily's flare has been tough to deal with this week. A doctors appointment showed a bladder infection as predicted and more antibiotics were started. Time was spent with Nick (hip hop teacher) and his lovely family yesterday when they took Emily to a show where Nick dances. She had such a wonderful time meeting everyone and hanging out, how luck we are to have this great family. Emily's pain level has been at a 9 out of 10 all week and she's been on edge and crabby. The antibiotics have made her bladder more comfortable she tells me so hopefully her pain level will reduce in her feet.
Tom has become a money earner this week. He worked with Karen's husband packing and unpacking stuff for his casino parties, he very proudly came home waving a check for $60 that he's earned all by himself. He says he's looking forward to buying Christmas presents for his family with money that I didn't give him. I'm pretty proud of him right now. We did have to have a chat about honestly today because I'm finding that he's bending the truth on stuff like homework and general things that he really doesn't want to do LOL He's going to start fresh tomorrow and try as hard as he can hot to tell fibs. It's very much his age but I just don't want him to get out of control, he's not perfect just like anyone and I'm OK with the fact that he's only human. "Hellen, did you eat that twinkie??? Nooooo the dog ate it" LOL
Pete went from super wonderful to a complete butt hole and back again in a 15 minute period this week. The stress of the opening just about pushed him over the edge. Last week he was lucky if he got 8 hours sleep for the whole week so was totally exhausted so I'm trying to be understanding. I do have a tolerance level which is set pretty high, he's almost surpassed it so better start checking his food for foreign objects LOL
Me? I'm tired and I think I'm getting a cold. I know I'm run down because I've been working with Pete each evening until at least 2 am then getting up at 6 am and carrying on a normal day. I've been worried about Emily's flare up and all that entails and concerned that Tom's getting left out again. Stressed about money and frustrated with people who just don't understand what's going on in our lives. I wanted to cook and do crafts with my children this weekend but had to work instead and although I'm delighted to help I'm aware that the time with my children is limited and precious and I want to make the most of every second. All in all I've found this week totally draining.
I really wish I could call Steve and talk to him, his voice was always so calming. He went golfing in Hawaii this year and bought me back some spices. I've been drinking lattes with Steve's nutmeg on it so make myself feel better. He loved the smell of nutmeg. Wish he was here ...
Emily's flare has been tough to deal with this week. A doctors appointment showed a bladder infection as predicted and more antibiotics were started. Time was spent with Nick (hip hop teacher) and his lovely family yesterday when they took Emily to a show where Nick dances. She had such a wonderful time meeting everyone and hanging out, how luck we are to have this great family. Emily's pain level has been at a 9 out of 10 all week and she's been on edge and crabby. The antibiotics have made her bladder more comfortable she tells me so hopefully her pain level will reduce in her feet.
Tom has become a money earner this week. He worked with Karen's husband packing and unpacking stuff for his casino parties, he very proudly came home waving a check for $60 that he's earned all by himself. He says he's looking forward to buying Christmas presents for his family with money that I didn't give him. I'm pretty proud of him right now. We did have to have a chat about honestly today because I'm finding that he's bending the truth on stuff like homework and general things that he really doesn't want to do LOL He's going to start fresh tomorrow and try as hard as he can hot to tell fibs. It's very much his age but I just don't want him to get out of control, he's not perfect just like anyone and I'm OK with the fact that he's only human. "Hellen, did you eat that twinkie??? Nooooo the dog ate it" LOL
Pete went from super wonderful to a complete butt hole and back again in a 15 minute period this week. The stress of the opening just about pushed him over the edge. Last week he was lucky if he got 8 hours sleep for the whole week so was totally exhausted so I'm trying to be understanding. I do have a tolerance level which is set pretty high, he's almost surpassed it so better start checking his food for foreign objects LOL
Me? I'm tired and I think I'm getting a cold. I know I'm run down because I've been working with Pete each evening until at least 2 am then getting up at 6 am and carrying on a normal day. I've been worried about Emily's flare up and all that entails and concerned that Tom's getting left out again. Stressed about money and frustrated with people who just don't understand what's going on in our lives. I wanted to cook and do crafts with my children this weekend but had to work instead and although I'm delighted to help I'm aware that the time with my children is limited and precious and I want to make the most of every second. All in all I've found this week totally draining.
I really wish I could call Steve and talk to him, his voice was always so calming. He went golfing in Hawaii this year and bought me back some spices. I've been drinking lattes with Steve's nutmeg on it so make myself feel better. He loved the smell of nutmeg. Wish he was here ...
Friday, December 07, 2007
Christmas
I really want Christmas to be special this year for my family because last year was so upsetting but I'm stressed beyond belief because I don't know how We're going to afford to provide anything let alone the Christmas that they deserve. My children left me a little note tonight saying that as long as we're together as a family this year they'll be happy with nothing. Happy with nothing, wow ... What an amazing statement, I find it really distressing ...
RSD ... Really Stupid Disease
http://www.youtube.com/watch?v=JOTUzQWbmYw This is a video about RSD made by a little girl Emily's age. The video covers many of the things that we've been though including PT, rehab and medication, it also gives a really good overview of RSD itself. What it doesn't show is how much pain she's in now and how much medication she still takes. It doesn't show the effects of the medication and how a simple virus can knock her off her feet. Maybe she hasn't got that far yet. I like this video, Emily and I have watched it many times including tonight at 1:30 am. I think it reminds Emily how far she's come and gives her hope.
We've decided to make a video this weekend ourselves just for fun and also to record this time in our lives.
The results of Emily's doctors visit? She has a bladder infection. The same one that she's had for months now and we just don't seem to be able to get rid of it. This infection is causing Emily to flare so I'm hoping the antibiotics will help us lose the cane. Emily's doctor and his staff are just so nice, it's like going home to family when we visit. We are so blessed to have them, they make me feel like I'm not dealing with this alone because all I have to do is call and they do what they can to help.
We've decided to make a video this weekend ourselves just for fun and also to record this time in our lives.
The results of Emily's doctors visit? She has a bladder infection. The same one that she's had for months now and we just don't seem to be able to get rid of it. This infection is causing Emily to flare so I'm hoping the antibiotics will help us lose the cane. Emily's doctor and his staff are just so nice, it's like going home to family when we visit. We are so blessed to have them, they make me feel like I'm not dealing with this alone because all I have to do is call and they do what they can to help.
Tuesday, December 04, 2007
Slipping
As each day goes by Emily is in more pain and my feeling of helplessness grows. She did really well today because she made it through her first day of school in over a week. I'm going to take her to the doctors tomorrow to get her looked at just in case somethings going. I feel that maybe she has one of the many virus's that we have going around and that's what triggered this flare up. I would rather not think about the fact that this could be round 2 and that the RSD is spreading instead I'm going to stay cautiously positive.
Tonight I spent 2 hours cleaning Emily's room. Like any other teenager Ms Emily lives in a mess most of the time. I know her energy is very much sapped right now so as a treat I decided to make it look amazing in there. Anything to put a smile on her face.
Karen and I went to the courthouse today to get Emily's disabled tag for my car. I was handed a permanent tag when I was really expecting a temporary one and I had to stop myself from bursting into tears in front of the lady behind the counter. I made it to the parking lot before I let it go. My daughter is registered as permanently disabled ...
Tonight I spent 2 hours cleaning Emily's room. Like any other teenager Ms Emily lives in a mess most of the time. I know her energy is very much sapped right now so as a treat I decided to make it look amazing in there. Anything to put a smile on her face.
Karen and I went to the courthouse today to get Emily's disabled tag for my car. I was handed a permanent tag when I was really expecting a temporary one and I had to stop myself from bursting into tears in front of the lady behind the counter. I made it to the parking lot before I let it go. My daughter is registered as permanently disabled ...
Saturday, December 01, 2007
Watch out!
With the cold weather came intense pain for Emily. Her RSD is clearly in both feet now and walking is really hard for her. As I look at her strained expression I cant help but feel panic in the pit of my stomach but I fight it back as much as possible. With her pain comes questions. Should we start back on medication or work through it? Can we work through it this time? Do Emily and I have what it tales to go another round with this crippling disease.
My Plan of action.
It seems that warmth and sunshine helps this disease so I'm going to take up a friends offer and take a trip to their hotel heated pool so that Emily can float and have fun.
Our Christmas activities started today and I'm doing something christmassy with my children everyday for the month of December. Tom's in charge of food and Emily decorations :)
I started gentle pain relief in the form of children's Motrin. I know that she may revert back to vicodin but as long as I can I'm going to find other options.
I'm keeping the movement up, we start Yoga in the morning. I bought brightly colored Frisbees, we're off to play Frisbee golf! Despite being back on her cane Emily will continue dancing lessons with Nick. How I hear you ask LOL if you'd met either myself or my daughter you'd know. With total strength and determination that's how!
Lots of friends will be invited to my home this December to keep Emily's focus away from pain.
I'm going to look into vitamin D and other supplements for her. I read recently that 95% of illnesses are due to a mineral deficiency so I'm going to study this more and create a diet rich in the foods that she needs to keep going. She has to keep going ...
For me, I'm going to wax LOL I'm going to dye the newly grey strands out of my hair and pluck my eyebrows. Today I spent an hour in my front garden trimming my hedges and planting winter pansies. I'm going to continue the good fight because that's what I do best. Look out RSD, I'm comin to get ya!
My Plan of action.
It seems that warmth and sunshine helps this disease so I'm going to take up a friends offer and take a trip to their hotel heated pool so that Emily can float and have fun.
Our Christmas activities started today and I'm doing something christmassy with my children everyday for the month of December. Tom's in charge of food and Emily decorations :)
I started gentle pain relief in the form of children's Motrin. I know that she may revert back to vicodin but as long as I can I'm going to find other options.
I'm keeping the movement up, we start Yoga in the morning. I bought brightly colored Frisbees, we're off to play Frisbee golf! Despite being back on her cane Emily will continue dancing lessons with Nick. How I hear you ask LOL if you'd met either myself or my daughter you'd know. With total strength and determination that's how!
Lots of friends will be invited to my home this December to keep Emily's focus away from pain.
I'm going to look into vitamin D and other supplements for her. I read recently that 95% of illnesses are due to a mineral deficiency so I'm going to study this more and create a diet rich in the foods that she needs to keep going. She has to keep going ...
For me, I'm going to wax LOL I'm going to dye the newly grey strands out of my hair and pluck my eyebrows. Today I spent an hour in my front garden trimming my hedges and planting winter pansies. I'm going to continue the good fight because that's what I do best. Look out RSD, I'm comin to get ya!
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