It's been so windy that every leaf has fallen from the tree in our front garden. Emily, Tom and I decided to bury my car LOLSunday, January 20, 2008
Windy!
It's been so windy that every leaf has fallen from the tree in our front garden. Emily, Tom and I decided to bury my car LOL
Saturday, January 19, 2008
Choices
I always have to make decisions, how do we know which way to go? When you have a chronically ill child you have so many choices to make each day. Your choices directly effect your child so which choices do you make. It's exhausting!!
In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.
I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)
The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL
Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.
RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.
In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.
I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)
The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL
Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.
RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.
2008
We spent 2007 reeling from the shock of Emily's "accident" and dealing with issues such as finding a good doctor and financial strain. We also dealt with alienation from both of our families. Catastrophic illnesses effect families in different ways. Some pull closer and become super supportive, others pull away and fail to comprehend the magnitude of what's happening. Sadly our families are the latter. I'm not bitter. While I understand that RSD is somewhat invisible to the eye and I understand that they don't truly get it, I wont forget their lack of compassion. At the same time I wont allow it consume me. 2008 See's me walking on without them. I will not carry the baggage that is our families dysfunction so to them I shrug my shoulders.
2008 brings a different mentality here. Last year RSD ruled so many aspects of our lives, this year we must push it to the side. We've lived with the horrific shock of what happened and we've mourned the loss of the old Emily and now it's time to push forward into maintenance mode. It's not easy but I make the mental decision each day before my foot hits the floor in the morning that the day will be the best we can make it.
This year I go forward without my friend Steve. I miss him everyday. Knowing him made me a better person and I will continue to be the person he knew and loved. He taught me so much, he's my guardian angel. His body may be gone but he stands behind me everyday and gives me the courage to keep going.
Financially we're ruined LOL January bought all negative bank accounts and to many bills but I'm trying not to stress out. If I don't have it and I can't get it what's the point of stressing about it LOL I'm just going to end up broke and sick myself so I'm just trying to be relaxed. If I vanish for a while again you know they cut my power off LOL
Emily was pulled from school before Christmas because she just doesn't have the stamina to stay for a full day. Removing her from school is not the best option especially as home bound services offer only 4 hours of tuition per week. With everything Emily's education has now fallen into my hands. I'm learning algebra again LOL I hated it the first time!! Her RSD pain has been slightly better than before Christmas and I'm very thankful for that. I've learned to take the good days and cherish them.
2008 brings a different mentality here. Last year RSD ruled so many aspects of our lives, this year we must push it to the side. We've lived with the horrific shock of what happened and we've mourned the loss of the old Emily and now it's time to push forward into maintenance mode. It's not easy but I make the mental decision each day before my foot hits the floor in the morning that the day will be the best we can make it.
This year I go forward without my friend Steve. I miss him everyday. Knowing him made me a better person and I will continue to be the person he knew and loved. He taught me so much, he's my guardian angel. His body may be gone but he stands behind me everyday and gives me the courage to keep going.
Financially we're ruined LOL January bought all negative bank accounts and to many bills but I'm trying not to stress out. If I don't have it and I can't get it what's the point of stressing about it LOL I'm just going to end up broke and sick myself so I'm just trying to be relaxed. If I vanish for a while again you know they cut my power off LOL
Emily was pulled from school before Christmas because she just doesn't have the stamina to stay for a full day. Removing her from school is not the best option especially as home bound services offer only 4 hours of tuition per week. With everything Emily's education has now fallen into my hands. I'm learning algebra again LOL I hated it the first time!! Her RSD pain has been slightly better than before Christmas and I'm very thankful for that. I've learned to take the good days and cherish them.
Monday, January 14, 2008
Update
It's been a long time since my last update. Christmas has come and gone and I'm trying to settle down into 2008.
Before Christmas Emily stared to decline so I stopped blogging to allow myself to take a breath during my only rest times. I can't live and breathe this 24 hours a day it's just to hard so I focus on the things that I can deal with and let the rest take care of itself, hope this makes sense.
Christmas was just wonderful. A special friend donated enough money to Emily's fund to allow me to create the Christmas that my children deserved. I was so down during the run up to Christmas because we're just so drained of money right now and I didn't know how I was going to pull off any kind of anything. My children would have made do with what I could provide and never said a word but I wanted so much for this year to be special because last year was just horrible. I can remember locking myself in the bathroom and sobbing after our scary Christmas lunch in the hospital last year, our world had fallen apart. I was so down about it this year and then along came a magic envelope with the promise of a real Christmas and again I sobbed but this time with relief. I'll never be able to thank Leaman enough for that gift, he really has no idea what an impact he had. Other friends also helped make Christmas special for us this year, we are so very lucky to have such amazing people in our lives. Thank you so much to all of you!
Christmas day was fun! I blubbed pathetically as the kids opened presents LOL It's hard not to be emotional! We bought Emily the present of her dreams, a cell phone! We called it as she unwrapped the present, she screamed! Tom got his dream present which was a PSP with Darth Vader on the back :)
New traditions were made this year and resolutions set. 2008 is going to be a much better year for us, a year in which we'll do what we can to give back to our community.
Before Christmas Emily stared to decline so I stopped blogging to allow myself to take a breath during my only rest times. I can't live and breathe this 24 hours a day it's just to hard so I focus on the things that I can deal with and let the rest take care of itself, hope this makes sense.
Christmas was just wonderful. A special friend donated enough money to Emily's fund to allow me to create the Christmas that my children deserved. I was so down during the run up to Christmas because we're just so drained of money right now and I didn't know how I was going to pull off any kind of anything. My children would have made do with what I could provide and never said a word but I wanted so much for this year to be special because last year was just horrible. I can remember locking myself in the bathroom and sobbing after our scary Christmas lunch in the hospital last year, our world had fallen apart. I was so down about it this year and then along came a magic envelope with the promise of a real Christmas and again I sobbed but this time with relief. I'll never be able to thank Leaman enough for that gift, he really has no idea what an impact he had. Other friends also helped make Christmas special for us this year, we are so very lucky to have such amazing people in our lives. Thank you so much to all of you!
Christmas day was fun! I blubbed pathetically as the kids opened presents LOL It's hard not to be emotional! We bought Emily the present of her dreams, a cell phone! We called it as she unwrapped the present, she screamed! Tom got his dream present which was a PSP with Darth Vader on the back :)
New traditions were made this year and resolutions set. 2008 is going to be a much better year for us, a year in which we'll do what we can to give back to our community.
Wednesday, December 12, 2007
Time to freshen up
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.
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 ...
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