Sunday, March 23, 2008
Stop, I want to get off
I can honestly say that I've hit some sort of wall LOL I've had it. I've had it with everything and I'm ready to get off this ride. Can someone please let me off???
Tuesday, March 11, 2008
My life ...
My day to day life has changed so much over the last 3 months. I now work close to 60 hours a week. I work round the corner from my house at a business we own so Emily and Tom can come with me. The financial stresses for the house and business fall firmly on my shoulders and this is so overwhelming. I have so many people screaming at me for large sums of money right now it just makes my head spin. This situation is just getting worse and worse and I see no end.
Emily's RSD hangs over my head like a huge concrete block. The pressure and hopelessness makes me feel panicked but those feelings have to stay locked inside.
Keeping Tom involved, happy and thriving is a challenge that takes time, energy and planning.
Emily can't stay focused on school work so she's slipping further and further behind, this is very worrying to me especially since I cant get the school to return my calls.
I need to prepare some legal papers but I just don't have time!!! This is really dumb!
Cooking healthy meals for my family has become difficult because I have no time and when I do get time I'm busy trying to organise and cope with the world. This bothers me.
I have a laundry mountain taller than my son and my floor looks like a barnyard. My garage is so full of junk you couldn't park a toy car in there let alone my focus and this makes me feel even more out of control.
My diet sucks and I can't organise myself well enough to make those changes that I need to make to stay healthy. This is also really dumb!
One of my dearest friends is struggling with her fathers illness and I wish I could split a very large bottle of wine with her. Unfortunately the ocean separates us.
Working full time would be fine if I were paid but right now I can't be so I work all these hours and still have to scrape for the bills to be paid. I really hate this. I hate the money issue in general, if that was off my head I'd feel 100lbs lighter.
Pete made an error with his home inspection business and I'm left to clear up the mess. If he'd listened to me in the beginning instead of being so freaking stubborn this error wouldn't have happened and this makes me feel angry.
A friend of a friend is threatening me with legal action because I did as she asked and re-homed a dog she'd found. She handed me the leash in front of a police officer so she's really insane but it's stress I don't need. I took the time to help her when as you can tell I really have no time and still I get shot in the foot. This makes me not trust people or want to be around anyone.
I feel angry towards Pete's family and my family for their lack of support, I'm fed up with always having to be the bigger person. I don't want to be the bigger person anymore, they should know better and I shouldn't have to feel bad about myself.
I have packages to get off to my dear friends in the UK as well as Birthday presents that remain unwrapped and undelivered to my little friends here, man I'm a failure!
Finally, it's 3:30 am and I'm sitting in my office typing this. I have to get up to get Tom off to school in less than 3 hours LOL On a positive note I have cleaned my kitchen, washed some clothes and updated my blog. I've unloaded my brain for a change so maybe now I'll sleep.
My urge to run away screaming is pretty high right now but hey, what can a girl do?
Emily's RSD hangs over my head like a huge concrete block. The pressure and hopelessness makes me feel panicked but those feelings have to stay locked inside.
Keeping Tom involved, happy and thriving is a challenge that takes time, energy and planning.
Emily can't stay focused on school work so she's slipping further and further behind, this is very worrying to me especially since I cant get the school to return my calls.
I need to prepare some legal papers but I just don't have time!!! This is really dumb!
Cooking healthy meals for my family has become difficult because I have no time and when I do get time I'm busy trying to organise and cope with the world. This bothers me.
I have a laundry mountain taller than my son and my floor looks like a barnyard. My garage is so full of junk you couldn't park a toy car in there let alone my focus and this makes me feel even more out of control.
My diet sucks and I can't organise myself well enough to make those changes that I need to make to stay healthy. This is also really dumb!
One of my dearest friends is struggling with her fathers illness and I wish I could split a very large bottle of wine with her. Unfortunately the ocean separates us.
Working full time would be fine if I were paid but right now I can't be so I work all these hours and still have to scrape for the bills to be paid. I really hate this. I hate the money issue in general, if that was off my head I'd feel 100lbs lighter.
Pete made an error with his home inspection business and I'm left to clear up the mess. If he'd listened to me in the beginning instead of being so freaking stubborn this error wouldn't have happened and this makes me feel angry.
A friend of a friend is threatening me with legal action because I did as she asked and re-homed a dog she'd found. She handed me the leash in front of a police officer so she's really insane but it's stress I don't need. I took the time to help her when as you can tell I really have no time and still I get shot in the foot. This makes me not trust people or want to be around anyone.
I feel angry towards Pete's family and my family for their lack of support, I'm fed up with always having to be the bigger person. I don't want to be the bigger person anymore, they should know better and I shouldn't have to feel bad about myself.
I have packages to get off to my dear friends in the UK as well as Birthday presents that remain unwrapped and undelivered to my little friends here, man I'm a failure!
Finally, it's 3:30 am and I'm sitting in my office typing this. I have to get up to get Tom off to school in less than 3 hours LOL On a positive note I have cleaned my kitchen, washed some clothes and updated my blog. I've unloaded my brain for a change so maybe now I'll sleep.
My urge to run away screaming is pretty high right now but hey, what can a girl do?
Long time no blog ...
It's really hard when you take a small blog break because as fast as my life is it's hard to catch up in the short time I get to actually sit down and type. I will however give it a go :)
I'm trying to get Emily back to school but it's just not happening. I called and asked for a letter to be written by Emily's doctor but he was away on vacation, finally it was faxed across to the school last Friday (3 weeks after I requested it) They truly do their best, I'm not complaining. I have now left 3 messages with the school and not had my call returned which is very frustrating. Again these guys have tried really hard to help Emily but I need to get her back to school!!
Physically we have good days and bad. Today has been bad but we'll just celebrate the several good days that she's had recently. I bought her some skinny jeans she thinks as a cool gift but they are actually to tight for her brace LOL Ahhhhh those sneaky Physical therapy tricks!! She loves wearing them because they make her feel attractive and we've found some DC shoes that she can wear that she says feel comfortable. She's quite a beautiful young lady.
Tom struggles daily with Emily. We have normal sibling rivalry mixed in with jealousy that everyone pays attention to Emily before him and added to that is a healthy does of guilt that he feels jealous. Emily can be snappy when she hurts but imagine her hurt and hormonal!! Quite a combination I can tell you and the other day Tom had just had enough. A small altercation ended in the remote control leaving Toms hand rather rapidly and finding it's resting place on Emily's right eye socket. I'm not sure who was the most devastated, Tom or Emily but lets just say that since then things have changed.
I can't imagine what it must be like to be Tom but I try. He was so ashamed of hurting Emily I didn't yell or punish because seeing her black eye each day was enough. Instead I'm setting him up with a support network and spending more time talking to him and teaching him ways to control his frustration. I'm also working with Emily to help her understand how Tom feels, this includes letting her know that this isn't her fault because that's all she kept saying after "if I hadn't got RSD this wouldn't have happened".
Several weeks have passed and Emily and Tom are getting along better. Tom's being much more open about how he feels and I feel slightly more in control.
This accident has changed so much of our lives, it's really hard. You shouldn't question why this happened because looking back is a waste of valuable time but I do hope things improve.
I'm trying to get Emily back to school but it's just not happening. I called and asked for a letter to be written by Emily's doctor but he was away on vacation, finally it was faxed across to the school last Friday (3 weeks after I requested it) They truly do their best, I'm not complaining. I have now left 3 messages with the school and not had my call returned which is very frustrating. Again these guys have tried really hard to help Emily but I need to get her back to school!!
Physically we have good days and bad. Today has been bad but we'll just celebrate the several good days that she's had recently. I bought her some skinny jeans she thinks as a cool gift but they are actually to tight for her brace LOL Ahhhhh those sneaky Physical therapy tricks!! She loves wearing them because they make her feel attractive and we've found some DC shoes that she can wear that she says feel comfortable. She's quite a beautiful young lady.
Tom struggles daily with Emily. We have normal sibling rivalry mixed in with jealousy that everyone pays attention to Emily before him and added to that is a healthy does of guilt that he feels jealous. Emily can be snappy when she hurts but imagine her hurt and hormonal!! Quite a combination I can tell you and the other day Tom had just had enough. A small altercation ended in the remote control leaving Toms hand rather rapidly and finding it's resting place on Emily's right eye socket. I'm not sure who was the most devastated, Tom or Emily but lets just say that since then things have changed.
I can't imagine what it must be like to be Tom but I try. He was so ashamed of hurting Emily I didn't yell or punish because seeing her black eye each day was enough. Instead I'm setting him up with a support network and spending more time talking to him and teaching him ways to control his frustration. I'm also working with Emily to help her understand how Tom feels, this includes letting her know that this isn't her fault because that's all she kept saying after "if I hadn't got RSD this wouldn't have happened".
Several weeks have passed and Emily and Tom are getting along better. Tom's being much more open about how he feels and I feel slightly more in control.
This accident has changed so much of our lives, it's really hard. You shouldn't question why this happened because looking back is a waste of valuable time but I do hope things improve.
Friday, February 15, 2008
School
I had a meeting with Emily's vice Principal, Bronwyn. She's such a nice person and I'm so grateful to her for everything she's done to help Emily this school year. It's clear that not enough work's getting done here at home for Emily to go forward so I had to come home and crack the whip. Emily has a lovely home bound teacher who is already overwhelmed with her many other students but she tries so hard to get Emily through her work. Usually after she leaves Emily crashes so not much more gets done. I set some higher goals for Emily and now she'll have to work harder to pass this grade. I know she can do it because she's totally awesome!
During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.
On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.
During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.
On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.
Tuesday, February 12, 2008
Yesterday
The cold weather has been difficult for Emily. Unable to get her legs warm, her pain has increased. I really don't enjoy watching Emily struggle, I would swap places with her in a heartbeat.
There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.
Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.
I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.
Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.
There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.
Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.
I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.
Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.
Sunday, 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 LOLSaturday, 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.
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