I do apologize again for not keeping up this blog daily. I'm just feeling so poorly after those Dr appointments. But I haven't forgotten you guys.
So I'm finally going back to see my pain Dr in the big city. He runs the show like the wizard in Emerald City in the wizard of Oz. He's the man behind the curtain, he tells my Dr up here what to do and then loves to tell me everything I'm doing wrong whether I'm doing it or not. He's one of those old school Dr's who has the mind belief that woman are supposed to listen to the man and keep quiet. Plus he loves to make fun of my weight EVERY chance he gets! I am 5'10" and before this started I was 190 pounds. I was 170 pounds when I was on swim team in high school for crying out loud! I wasn't fat. But he says "Oh so you have always been a heavy girl." Uh no. I only became heavy when I lost the ability to walk and even then it wasn't because I was stuffing my face with Twinkies! I eat far less than I did before, it was the medication mostly and the inability to move. Plus I decided that I wasn't going to deprive myself from the foods I love because I was disabled. I was deprived enough. That doesn't mean that I was stuffing myself with junk food either. So, it's going to be a hard visit with him. I always love it when he criticizes my weight, like I don't feel disgusted with myself as it is.
I started a home exercise home program where I walk around the house every hour for so many laps. I started it because I just couldn't stand the way I looked anymore. Well, circumstances happened and I stopped for awhile. Now I know we are going to be going down for a visit in 47 days. So I have to bust my ass and get moving! I have to cut out as much bad food out that I can. I have to drink more water. Because I don't know if exercise will be enough. And I really want to show that smug little bastard that I am doing the best I can for my body right now. And if I wasn't disabled I wouldn't look like this.
So, here I go 47 days til the finish line. I'll post my progress and we shall see where I am in 47 days! This is kind of nerve wracking, and exhilarating and at the same time!
Thursday, May 31, 2012
Tuesday, May 29, 2012
Memories.....
I'm sorry I've been incognito lately. I just had my pain pump filled ( which is hard enough in itself ) but the very next day I got to go to the dentist and get two teeth drilled on. While getting cavities taken care of for most people is no big deal it is a huge deal for me. When I was a kid and got cavities taken care of it wasn't a problem. But after the RSD everything just becomes magnified. So, I'm really sorry for not writing these past couple days. I was pretty knocked out from the pain.
I learned that yet another fast food restaurant place had closed in our area and it made me sad. Sad because I remembered all the memories I had from this place, memories I had made before I got RSD. Going for a salad with a good friend after our long walks and driving lessons, grabbing a late night snack with my sister after a late night movie we went to. And it isn't just this restaurant it's other restaurants that have closed. Probably the hardest one that closed was the store I worked at right before I got RSD. It was a beautiful department store and everyone loved me there. It was so hard to know I will never see the people working there again or the beautiful stained glass domed lights above the store. I also had to say good bye to my grandparents house this month. All those memories of Thanksgiving dinners, decorating Christmas trees and making Christmas cookies is now just a memory.
I know they are just places and time moves on and they do change. It's hard to let them go when so much has already been lost. I lost: my ability to walk, to wear shooooes ( what we call fancy shoes ), my good figure, 8 years of my life, and most important my health. So, when I see things disappear that had a connection to my life from before RSD it makes me feel I guess a little more forgotten. I know it makes no logical sense at all. I just feel as the years go by that I'm just standing still and everything and everyone are moving at warp speed all around me. Having these places where I had memories was a way to say I'm still here and I was a part of your lives.
These feelings of being forgotten are so hard to fight. Sometimes I think they are harder to fight than the RSD. I would rather deal with the physical than the emotional any day. Physical is easy. Emotional stuff is hard to deal with. Especially feelings of self loathing and abandonment. But as I work through the physical I will work through the emotional too.
I learned that yet another fast food restaurant place had closed in our area and it made me sad. Sad because I remembered all the memories I had from this place, memories I had made before I got RSD. Going for a salad with a good friend after our long walks and driving lessons, grabbing a late night snack with my sister after a late night movie we went to. And it isn't just this restaurant it's other restaurants that have closed. Probably the hardest one that closed was the store I worked at right before I got RSD. It was a beautiful department store and everyone loved me there. It was so hard to know I will never see the people working there again or the beautiful stained glass domed lights above the store. I also had to say good bye to my grandparents house this month. All those memories of Thanksgiving dinners, decorating Christmas trees and making Christmas cookies is now just a memory.
I know they are just places and time moves on and they do change. It's hard to let them go when so much has already been lost. I lost: my ability to walk, to wear shooooes ( what we call fancy shoes ), my good figure, 8 years of my life, and most important my health. So, when I see things disappear that had a connection to my life from before RSD it makes me feel I guess a little more forgotten. I know it makes no logical sense at all. I just feel as the years go by that I'm just standing still and everything and everyone are moving at warp speed all around me. Having these places where I had memories was a way to say I'm still here and I was a part of your lives.
These feelings of being forgotten are so hard to fight. Sometimes I think they are harder to fight than the RSD. I would rather deal with the physical than the emotional any day. Physical is easy. Emotional stuff is hard to deal with. Especially feelings of self loathing and abandonment. But as I work through the physical I will work through the emotional too.
Wednesday, May 23, 2012
Moving Out? Moving Up?
First I apologize for my not writing every day I am really sick with a bad head cold and things are a bit intense at home. I also know my posts haven't been exactly been about living with RSD and I'm sorry that I ignored that part of my life in those posts. I will try and be more balanced in my posts.
So, this week my friend moved into her new house in a town about 3 hours away. About 2 weeks before we went online and bought a bunch of rubber ducky items to decorate her bathroom with. And as it started coming in and the date drew nearer I started thinking back to when I first got RSD. I had made these plans to get a quick degree ( dental assistant ) and move to New York City. But, would I have? For all the talk that I was spouting back then I really wasn't that mature. I was still very much a kid. I don't think I was ready.
And then RSD showed up and knocked those dreams out of my head. About a year after I became disabled my middle sister moved out. She was such a shy girl, she wouldn't even call in her medications on an automated machine. But, she moved out. There were a whole bunch of thoughts going through my head. I'm sad to say that the first one wasn't I'm so happy and proud of you for taking such a big step. They were thoughts of: jealousy that she got to take this big step first, that I was the big sister I was supposed to do everything first, and then feelings of total inadequacy. I was happy for her. I am happy for her still.
I look at my friend and my sister who are both younger than me and I just wonder do I have what it takes to strike out on my own? Or will I always be this timid individual with massive feelings of inadequacy? I hope that one day I find out if I have what it takes. But what I really hope is that I get to make it to New York City.
So, this week my friend moved into her new house in a town about 3 hours away. About 2 weeks before we went online and bought a bunch of rubber ducky items to decorate her bathroom with. And as it started coming in and the date drew nearer I started thinking back to when I first got RSD. I had made these plans to get a quick degree ( dental assistant ) and move to New York City. But, would I have? For all the talk that I was spouting back then I really wasn't that mature. I was still very much a kid. I don't think I was ready.
And then RSD showed up and knocked those dreams out of my head. About a year after I became disabled my middle sister moved out. She was such a shy girl, she wouldn't even call in her medications on an automated machine. But, she moved out. There were a whole bunch of thoughts going through my head. I'm sad to say that the first one wasn't I'm so happy and proud of you for taking such a big step. They were thoughts of: jealousy that she got to take this big step first, that I was the big sister I was supposed to do everything first, and then feelings of total inadequacy. I was happy for her. I am happy for her still.
I look at my friend and my sister who are both younger than me and I just wonder do I have what it takes to strike out on my own? Or will I always be this timid individual with massive feelings of inadequacy? I hope that one day I find out if I have what it takes. But what I really hope is that I get to make it to New York City.
Monday, May 21, 2012
My Saga Of Pain
I got RSD in my left foot after I had an ingrown infected toenail removed for the 5th time. It was supposed to go smoothly just like all the other times. But, this time they used some kind of poison to kill the root of the nail. So the poison added to the fact that I had had RSD in my shoulder for 10 years kicked back up the dormant RSD still lying in wait. They didn't give me proper pain control because they just tried to give me vicoden and that doesn't wok on me. So, they kept trying different medications and more medications. Then they moved onto different injections.
They tried nerve blocks ( which made the RSD spread like wildfire until it was my entire left leg from my toes to my hip ), epidural blocks, ketamine infusions, and steroid blocks. None of these worked, most made the pain worse.
Then I tried other methods besides drugs. I tried a device called a TENS unit which you put little pads over the area where you need relief and attach the wire to a device and it will provide electrical stimulation. For me there was no relief. It only made my pain worse. I tried a Spinal Cord Stimulator twice. Both times it was excruciating and both times it didn't help and once again aggravated the pain even more.
Which lead to me my last hope a device called a pain pump. It's much like an insulin pump except it's all internal. I wasn't interested in having a foreign object in my body at all. The thought was just too creepy feeling. But after hearing there was absolutely nothing left in the Dr's bag of tricks I agreed to the trial.
So, after a two and a half week trial ( they said it would only be a week ) I was wheeled down to the operating room to have some weird metal type round pump put in. But of course this was another surgery. Not so after the surgery I noticed my pain wasn't decreasing but increasing. Turns out that the operation to put in something that was to help with the pain has now caused more pain. Every time my abdomen is touched it's like being stabbed with burning hot pokers, or having a bunch or fire ants nibbling away at my skin, and that's just when it's being touched.
About every month and a half I have to get my pump refilled. It's pure agonizing hell! The Dr has to find the little rubber hole called the port. He then injects a REALLY long needle into the port and then takes out whatever little bit of medicine I have left and then refills it. I have almost passed out from this procedure many many times. It's awful enough in itself but the pain stays flared up for weeks after.
I get to have my pump refilled this wednesday and now on top of the expected pain I know is coming I have a horrendous cold. My nose is so plugged up I can only breathe through my mouth. I'm as sick as a dog. This will be an interesting pump refill.
Saturday, May 19, 2012
Norwegian Grief
First off I am sorry I didn't get a chance to post yesterday but yesterday was a really rough day. My dad has been sick so I've been trying to help out more, keeping my sister in line since my mom is in the middle of a relapse, and we found out that my mom's dog who was sick isn't just sick but riddled with tumors in his heart his lungs and only has about a month left to live. It was a very stressful day.
My dad has always been the very stoic Norwegian type. Doesn't like to have people get in his personal space, is always fine ( even if he's got blood spurting out from a massive head trauma ), very hard headed, and he doesn't cry. I have seen him cry only a few times in is entire life and most of those were when an animal has passed away in our family. But, yesterday yesterday was something I had never seen before. He apparently was crying so hard the vet had to call the dog's breeder ( who has been very involved in his life ). It really shook me.
It shook me because here was this strong man showing such emotion and I couldn't even cry! Everyone always says how much my dad and I are alike. I'm daddy's girl all the way. I never cry at movies, and I hate people touching me. But, I felt like the worlds coldest bitch when I was the only one in my family who didn't cry. So last night I was dreaming my usual pain nightmares ( I don't get much deep sleep and when I do I have pain dreams where I am somehow being tortured or run over something to make the pain seep through into my dream ) and I started dreaming about my mom's dog being ripped away from us. I didn't even realize I was crying until I woke myself up from nose being so plugged up I had been crying so hard. It was as if my dream gave me the release I needed to.
Sorry things have been such a downer lately in my posts. Promise it will cheer up soon. Thank you all so much for sticking with me!
My dad has always been the very stoic Norwegian type. Doesn't like to have people get in his personal space, is always fine ( even if he's got blood spurting out from a massive head trauma ), very hard headed, and he doesn't cry. I have seen him cry only a few times in is entire life and most of those were when an animal has passed away in our family. But, yesterday yesterday was something I had never seen before. He apparently was crying so hard the vet had to call the dog's breeder ( who has been very involved in his life ). It really shook me.
It shook me because here was this strong man showing such emotion and I couldn't even cry! Everyone always says how much my dad and I are alike. I'm daddy's girl all the way. I never cry at movies, and I hate people touching me. But, I felt like the worlds coldest bitch when I was the only one in my family who didn't cry. So last night I was dreaming my usual pain nightmares ( I don't get much deep sleep and when I do I have pain dreams where I am somehow being tortured or run over something to make the pain seep through into my dream ) and I started dreaming about my mom's dog being ripped away from us. I didn't even realize I was crying until I woke myself up from nose being so plugged up I had been crying so hard. It was as if my dream gave me the release I needed to.
Sorry things have been such a downer lately in my posts. Promise it will cheer up soon. Thank you all so much for sticking with me!
Thursday, May 17, 2012
Dogs Are Everyone's Best Friends!
Ever since I was about 3 years old we have had a dog. First it was just the family dog, then everyone started getting their own dog. I had one other dog before I got Riley, her name was Tasha. She was such a comfort during those awkward teen years. Then after she passed I swore I was done with dogs. I couldn't take the pain that comes every time you loose one. But, I got RSD and suddenly I'm trying to fit my mom's 55 pound standard poodle in my lap! So, I convinced myself through much deliberation that getting a lap dog during this time would be very beneficial. that's how I met Riley, my rock and my little champion.
Riley was about 2 years old when I got him. He was a show dog who had reached the end of his show days. His owner was a woman who lived alone and had taught him to be aggressive, especially towards men. My dad had business up close to where she lived so he got to meet Riley first. Riley just walked right up to him and put his front paws on my dads legs. It is because of this that we always say that somehow Riley knew he was supposed to come home with us. From the moment that Riley and I met we have been inseparable. Every time I get home whether it has been 20 minutes or 2 days he acts as if I had been gone for a year. Every time he has to go to the groomers I sit and pace all day until he comes home. I couldn't have asked for a better companion to help me through all this.
My mom who has Chronic Fatigue has a dog of her own. He was taught for a brief period to be a service dog for her. Which means he can get things for her or she can use him to brace herself when she gets up. He is a big clown and sometimes forgets how big he really is. He's bigger than most standard poodles. But, you never really think about anything happening to them before it's their time. Well for some reason my mom's dog is suddenly very sick. The vets can't figure out what's wrong with him. It's a very scary and trying time for my mom. Especially after just losing her dad.
Dogs are such an important part of my family's life. It's just hard to remember that with all the good memories and good times comes with that sad good bye. But, somehow we always find a way to open our hearts again.
Riley was about 2 years old when I got him. He was a show dog who had reached the end of his show days. His owner was a woman who lived alone and had taught him to be aggressive, especially towards men. My dad had business up close to where she lived so he got to meet Riley first. Riley just walked right up to him and put his front paws on my dads legs. It is because of this that we always say that somehow Riley knew he was supposed to come home with us. From the moment that Riley and I met we have been inseparable. Every time I get home whether it has been 20 minutes or 2 days he acts as if I had been gone for a year. Every time he has to go to the groomers I sit and pace all day until he comes home. I couldn't have asked for a better companion to help me through all this.
My mom who has Chronic Fatigue has a dog of her own. He was taught for a brief period to be a service dog for her. Which means he can get things for her or she can use him to brace herself when she gets up. He is a big clown and sometimes forgets how big he really is. He's bigger than most standard poodles. But, you never really think about anything happening to them before it's their time. Well for some reason my mom's dog is suddenly very sick. The vets can't figure out what's wrong with him. It's a very scary and trying time for my mom. Especially after just losing her dad.
Dogs are such an important part of my family's life. It's just hard to remember that with all the good memories and good times comes with that sad good bye. But, somehow we always find a way to open our hearts again.
Wednesday, May 16, 2012
Just One Of Those Days
Today is just one of those days where nothing is going right, people are in super "touchy" moods and anything that could go wrong probably will. It didn't start out so bad. Woke up like usual, way earlier than the rest of the family at about 6 am. Watched some TV on the computer, had some breakfast enjoyed the blissful and yet oh so seldom moments of silence.
Then my youngest sister wakes up and she's off to volunteer at a program for senior citizens. Not so awful, except she is quite an intense person by nature so she tends to kick my nerves into high gear. So as I was feeding all the dogs I noticed that my mom's dog couldn't move and when he did finally make it into his kennel it was as if his whole back end had been paralyzed.
So, now there is something wrong with the dog and it isn't even 9 am yet. Dad drops Youngest sis off comes back we keep an eye on the pooch. I try to get some laundry ready to get checked for stains before I put in for washing. Can I find the things I really need washed? Of course not! But I'm sure you knew that was going to be my answer.
My mom wakes up and asks me whats wrong with her dog. She has a hard time dealing with intensity when she first gets up, like I do. So I try to think of a way to downplay the situation. Can't come up with any so I tell her the truth. But, this is too much for her after not getting enough sleep and so I have upset her now. Now I am in the dog house for saying too much when she first woke up. I was waiting for her to wake up to do laundry because she had my lingerie bags in her room. Now, I can't even go in her room. So no laundry today! And I really needed it too.
Having a day like today reminds me of that kids book: Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. It's just one of those special books from childhood that has stuck with me. I suggest to anyone who hasn't read it to read it. We all have an Alexander day from time to time.
Then my youngest sister wakes up and she's off to volunteer at a program for senior citizens. Not so awful, except she is quite an intense person by nature so she tends to kick my nerves into high gear. So as I was feeding all the dogs I noticed that my mom's dog couldn't move and when he did finally make it into his kennel it was as if his whole back end had been paralyzed.
So, now there is something wrong with the dog and it isn't even 9 am yet. Dad drops Youngest sis off comes back we keep an eye on the pooch. I try to get some laundry ready to get checked for stains before I put in for washing. Can I find the things I really need washed? Of course not! But I'm sure you knew that was going to be my answer.
My mom wakes up and asks me whats wrong with her dog. She has a hard time dealing with intensity when she first gets up, like I do. So I try to think of a way to downplay the situation. Can't come up with any so I tell her the truth. But, this is too much for her after not getting enough sleep and so I have upset her now. Now I am in the dog house for saying too much when she first woke up. I was waiting for her to wake up to do laundry because she had my lingerie bags in her room. Now, I can't even go in her room. So no laundry today! And I really needed it too.
Having a day like today reminds me of that kids book: Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. It's just one of those special books from childhood that has stuck with me. I suggest to anyone who hasn't read it to read it. We all have an Alexander day from time to time.
Tuesday, May 15, 2012
Trying To Find Myself In Me
I never had the greatest love for my body. I always felt it was too fat even when it wasn't. It probably started in high school that I realized how much my body didn't look like a stick figure and I hated it. I wasn't fat, I was on the swim team! It was all muscle, but it just didn't matter. Before this happened I was in amazing shape. I walked all over NYC, through Central Park, along Wall St, up and down alongside those famous locations. But, still I felt I was fat and ugly. Which I wasn't. I always look back and think to myself "What the hell were you thinking?"
Sometimes when I'm alone in deep thought I ask myself one question "Who are you?" I mean really who am I in this vast universe? It always psychs me out. I suddenly feel utterly alone and very insignificant. It's such a weird question. But, you can get a always get a deep answer back. It's also another way for me to ask the universe why the hell I was created.
I truly wish I didn't hate myself the way I do. The vehement passion is of my loathing is indescribable. I hope to be able to find some love for myself, regardless of whether or not I still have RSD or that I'm heavy. That's my goal anyways.
Monday, May 14, 2012
Good Byes Just Suck
I started looking back at how many good byes I've had to say over these past 8 years. Some were just see ya laters that never were seen again. Some were just ambivalent good byes as we drifted apart. Some were tearful good byes as they left to move away. But the worst good byes are the ones where you know you will never see them again. The times you have to say good bye to someone who's dying.
I have had to say good bye to many friends since I became disabled. Most of them were either; the see ya laters or the drifting aparts. Those were hard because I never knew if I had done something to ruin our friendship, or was it just that my disability made them uncomfortable. I had 1 friend who just stopped coming over, stopped calling, she would respond to my texts until I mentioned getting together. Then dead silence. I still wish to know what it was that I did that drove her away. There was one family who lived behind us and we loved them as if they were a part of our family. We had a gate and path between our 2 houses. But, the job situation drove them out of the area. That was my first hard good bye. When my sister moved was my second. She was/is my best friend and the not seeing her every day is very hard.
My first exposure to real loss was my grandmother. She was an amazing woman of such strength and integrity. She was a woman stuck in a loveless marriage with a man who treated her like a slave but she had such an amazing heart regardless. Because of my grandfather's unpleasant demeanor I was never able to spend much time with my grandmother growing up. But, when she got cancer, I got RSD. We had a chance to really bond and connect. I wouldn't trade that time for anything. The loss when she died was amazing. I had a hole in my heart so big. I could only think what will it be like when my parents go? What is it like for them?
Well, now my mother has lost her father today. After a long battle with Alzheimer's he passed away tonight. He and I never had much of a relationship seeing as how we have always lived a long ways away from each other. But, once again I'm reminded of the fragility of life. And of how quickly a see ya later can become a permanent good bye. I give much sympathy to all those who have had to say good bye to someone they loved.
I have had to say good bye to many friends since I became disabled. Most of them were either; the see ya laters or the drifting aparts. Those were hard because I never knew if I had done something to ruin our friendship, or was it just that my disability made them uncomfortable. I had 1 friend who just stopped coming over, stopped calling, she would respond to my texts until I mentioned getting together. Then dead silence. I still wish to know what it was that I did that drove her away. There was one family who lived behind us and we loved them as if they were a part of our family. We had a gate and path between our 2 houses. But, the job situation drove them out of the area. That was my first hard good bye. When my sister moved was my second. She was/is my best friend and the not seeing her every day is very hard.
My first exposure to real loss was my grandmother. She was an amazing woman of such strength and integrity. She was a woman stuck in a loveless marriage with a man who treated her like a slave but she had such an amazing heart regardless. Because of my grandfather's unpleasant demeanor I was never able to spend much time with my grandmother growing up. But, when she got cancer, I got RSD. We had a chance to really bond and connect. I wouldn't trade that time for anything. The loss when she died was amazing. I had a hole in my heart so big. I could only think what will it be like when my parents go? What is it like for them?
Well, now my mother has lost her father today. After a long battle with Alzheimer's he passed away tonight. He and I never had much of a relationship seeing as how we have always lived a long ways away from each other. But, once again I'm reminded of the fragility of life. And of how quickly a see ya later can become a permanent good bye. I give much sympathy to all those who have had to say good bye to someone they loved.
Sunday, May 13, 2012
Mothers
Since it is Mothers Day today I thought I would talk about my mom and our relationship. I am the first of three daughters. She fought long and hard to get the three of us. She was blessed when she had me but my middle sister was a miracle. She suffered several miscarriages before we came around. My youngest sister was adopted.
My mom always taught us to be open with our feelings and that we could ask any questions. It made for some interesting fights. Never go to bed angry. Even if you go to bed at 2:00 A.M.. She is the "counselor" of the family holding everyone together. She's got an amazingly generous heart always looking for ways to help others.
My mom and I have always been very close. When I was sick with migraines in high school that's when we really bonded. My mom also suffers from Chronic Fatigue Syndrome. She and I commiserated together over pain by watching lots of Quantum Leaps and Macgyvers. Later on through my adult years our relationship has grown into a friendship of love and respect.
HAPPY MOTHER'S DAY TO ALL MOTHERS!
My mom always taught us to be open with our feelings and that we could ask any questions. It made for some interesting fights. Never go to bed angry. Even if you go to bed at 2:00 A.M.. She is the "counselor" of the family holding everyone together. She's got an amazingly generous heart always looking for ways to help others.
My mom and I have always been very close. When I was sick with migraines in high school that's when we really bonded. My mom also suffers from Chronic Fatigue Syndrome. She and I commiserated together over pain by watching lots of Quantum Leaps and Macgyvers. Later on through my adult years our relationship has grown into a friendship of love and respect.
HAPPY MOTHER'S DAY TO ALL MOTHERS!
Saturday, May 12, 2012
Love
I have found that love is truly the most powerful thing on this planet. I was so full of hate for so long. It sometimes feels like it is more work to be happy, and I lived on this theory for quite awhile. But it isn't true. Love opens your eyes, whereas hate just keeps them closed to everything around you.
I have always been a helpful person. Since I was about 9 years old I helped take care of my siblings and take care of the house. Soon it became second nature for me to become a second parent, or to clean the house whenever I got mad. I painted the entire exterior of our house with a single hand held paintbrush. Helping is something that's just become second nature to me.
Becoming disabled I was no longer able to help. I had to ask for help. My love of helping slowly turned to resentment which turned to hate. I hated not being able to do work around the house. As my parents health got worse I hated not being able to help them. Why should they have to help me? They were the ones who needed help. It took some time to realize that there were ways I could show my support and love.
I couldn't do the amount or the types of work I used to do anymore. It was a tough battle to let go of that anger and hate and come to a new realization. My eyes were opened when I became open to God again. I found that I still had love left. I found a way to still be helpful. I could help people in a new way. I found new ways to work, ways that I could still feel useful and that I was being supportive of my poor parents.
Love of my family, love of service has given me purpose. Love has saved me from myself.
I have always been a helpful person. Since I was about 9 years old I helped take care of my siblings and take care of the house. Soon it became second nature for me to become a second parent, or to clean the house whenever I got mad. I painted the entire exterior of our house with a single hand held paintbrush. Helping is something that's just become second nature to me.
Becoming disabled I was no longer able to help. I had to ask for help. My love of helping slowly turned to resentment which turned to hate. I hated not being able to do work around the house. As my parents health got worse I hated not being able to help them. Why should they have to help me? They were the ones who needed help. It took some time to realize that there were ways I could show my support and love.
I couldn't do the amount or the types of work I used to do anymore. It was a tough battle to let go of that anger and hate and come to a new realization. My eyes were opened when I became open to God again. I found that I still had love left. I found a way to still be helpful. I could help people in a new way. I found new ways to work, ways that I could still feel useful and that I was being supportive of my poor parents.
Love of my family, love of service has given me purpose. Love has saved me from myself.
Friday, May 11, 2012
Change
The definition of change is: to alter, modify, redesign, make or become different, according to the Mac dictionary. Yet for me the word change feels confrontational and even hostile. What I hear is "You aren't good enough. or "I'm not proud of you." I'm sure what people mean are things like: "Here are some ways to help you achieve your goals."
Change is a hard obstacle to overcome and even harder when you feel that you are alone in it all. Right now I have to change a couple things. The big one is I have to stop hating myself. I honestly don't know if I will ever be able to accomplish that but I am trying. I also have to try and get serious about weight loss again. I'm already exercising and eating well, and have lost 50 plus pounds. But, I need to try and be more aggressive about it. Maybe wait on that one until after that lovely monthly visit is over. ;-).
Looking back at these 8 years I realized I have made many changes. Some good, some not good. Some good changes: I'm not as immature as I was at the beginning. I'm not an angry ball of rage and disappointment anymore. Some not so good changes: My body loathing really went up after I gained all the extra weight from not being able to move. I don't trust people like I used to.
I guess I look at change as criticism. Like you are okay but really you could be better. Maybe, before I try to work on believing that change is just change I should learn to trust first. Because without the trust everything looks like a giant criticism.
Change is a hard obstacle to overcome and even harder when you feel that you are alone in it all. Right now I have to change a couple things. The big one is I have to stop hating myself. I honestly don't know if I will ever be able to accomplish that but I am trying. I also have to try and get serious about weight loss again. I'm already exercising and eating well, and have lost 50 plus pounds. But, I need to try and be more aggressive about it. Maybe wait on that one until after that lovely monthly visit is over. ;-).
Looking back at these 8 years I realized I have made many changes. Some good, some not good. Some good changes: I'm not as immature as I was at the beginning. I'm not an angry ball of rage and disappointment anymore. Some not so good changes: My body loathing really went up after I gained all the extra weight from not being able to move. I don't trust people like I used to.
I guess I look at change as criticism. Like you are okay but really you could be better. Maybe, before I try to work on believing that change is just change I should learn to trust first. Because without the trust everything looks like a giant criticism.
Thursday, May 10, 2012
Self-Esteem
I can't say for certain that I ever had great self-esteem. What girl can these days? Society's places so many pressures on women. That there is only one way to look beautiful, which is impossible for most of the general populace to ever achieve. That there is only one road after high school which is the norm: college, marriage, family. These are standards that are drilled into us from a very early age. When I was growing up I would look at our JcPenny catalogue with my sister. We would decide what out wedding dress would be, what our honeymoon wardrobe would be, and then we got down to business and started decorating our nurseries. We were having fun as kids but even as a kid I knew that all I wanted was to be a mom. I'm not saying that society is pushing motherhood on us. I'm saying that if you look closely at advertising you will always see the "perfect" family.
I was watching an episode of Glee and it talked about domestic violence. The character who was abused said why she didn't leave was she was worried there was going to be no one else to love her. I'm sad to say that this really hit home for me. I have lost my physical attractiveness which has been hard, I'm not vain I just miss having a body that worked. I hate running into classmates and doing the "what have you been up to" question. I always feel so inferior. As far as relationships goes I haven't had any. Been disabled my entire adult life. I don't know if I will ever find someone. Hard to do it when you are stuck at home.
The question is how much of my sad self-esteem issues are of my own making and how much has society influenced me? Does it matter? Internal or external pressure it's still pressure and it still is hard.
I know this has been a bit of a depressing post so I'll leave you with this. I'm not depressed by nature. Maybe I come across this way sometimes. If I do it's only because I'm voicing my inner frustrations.
I was watching an episode of Glee and it talked about domestic violence. The character who was abused said why she didn't leave was she was worried there was going to be no one else to love her. I'm sad to say that this really hit home for me. I have lost my physical attractiveness which has been hard, I'm not vain I just miss having a body that worked. I hate running into classmates and doing the "what have you been up to" question. I always feel so inferior. As far as relationships goes I haven't had any. Been disabled my entire adult life. I don't know if I will ever find someone. Hard to do it when you are stuck at home.
The question is how much of my sad self-esteem issues are of my own making and how much has society influenced me? Does it matter? Internal or external pressure it's still pressure and it still is hard.
I know this has been a bit of a depressing post so I'll leave you with this. I'm not depressed by nature. Maybe I come across this way sometimes. If I do it's only because I'm voicing my inner frustrations.
Wednesday, May 9, 2012
Shopping At Target
Yesterday, I got to go to Target with my friend. We had coffee first at the Starbucks that was located in the Target and both had these amazingly good but totally bad for you frappuccinos. Perfect to cool a person down from the unusually warm weather we've been having lately. So after coffee we went shopping.
I got some curtain tie backs, new water bottle, itunes cards, toy for my dog ( I almost always buy a small something for my dog when I go out - yes I know how spoiled he is, and so does he :-)), and a couple candles. I love candles. It's not the fire aspect as it's the smell. I love smelling candles. We spent probably two and a half hours there. I could have gone longer. I love going to Target. They have so many interesting things to look at it, makes me just want to redecorate my room over and over again, or redecorate our house. They always have an amazing selection of clearance items, if you know where to look. I honestly don't know what we did before we had Target.
I got some curtain tie backs, new water bottle, itunes cards, toy for my dog ( I almost always buy a small something for my dog when I go out - yes I know how spoiled he is, and so does he :-)), and a couple candles. I love candles. It's not the fire aspect as it's the smell. I love smelling candles. We spent probably two and a half hours there. I could have gone longer. I love going to Target. They have so many interesting things to look at it, makes me just want to redecorate my room over and over again, or redecorate our house. They always have an amazing selection of clearance items, if you know where to look. I honestly don't know what we did before we had Target.
Tuesday, May 8, 2012
Visit From Sis!
So, I found out yesterday that my pregnant sister was given a-OK by her midwife to come up for a visit next month!! I'm so excited! The last time I saw her was about a year and a half ago. She and I were very close growing up. We were each others best friends. We did everything together. So when she and her then boyfriend, now husband, moved 9 hours away it was really hard. But, we keep in touch. Although she is far busier than I am, going to school and working and being pregnant!
But, I get to see her next month! Guess I should really get going on all those baby clothes and blankets I promised I would knit for her. ;-) Time to plan an impromptu baby shower too! Boy that's a lot to do now that I actually wrote it all down! So, off to knit.
Monday, May 7, 2012
Beauty In The Rough
You can look at life 2 ways - glass half full or glass half empty. For the first few years all I could see was the glass half empty. Didn't matter how wonderful anything was around me it was always awful. I couldn't even enjoy Christmas.
It took a long time for me to notice how beautiful the world still is. There are fabulous people and amazing new ways to look at things. Yes, I am still in the same amount of pain that I was in the day before but today I can appreciate being alive. It was a hard road to get there, I'm not saying it happened overnight. But, the end result is I'm happier, and easier to be around if you ask my family.
Which brings me to today. I have more pain in my body than usual. My usual RSD pain which is in my abdomen and leg are flared up, I have a bad migraine, my neck is killing me from the bad angle I slept in last night and I have TMJ pain! But today the sun is shining, the temperature is just perfect,it's a fabulous day! I just got the dragon I have been trying for for MONTHS on a game called Dragon Vale! Simple but beautiful joys! I'm looking for a fabulous going away present for my friend. It's a good day. And since we get so few absolutely perfect days like today here where I live I'm going to go outside and enjoy it!
It took a long time for me to notice how beautiful the world still is. There are fabulous people and amazing new ways to look at things. Yes, I am still in the same amount of pain that I was in the day before but today I can appreciate being alive. It was a hard road to get there, I'm not saying it happened overnight. But, the end result is I'm happier, and easier to be around if you ask my family.
Which brings me to today. I have more pain in my body than usual. My usual RSD pain which is in my abdomen and leg are flared up, I have a bad migraine, my neck is killing me from the bad angle I slept in last night and I have TMJ pain! But today the sun is shining, the temperature is just perfect,it's a fabulous day! I just got the dragon I have been trying for for MONTHS on a game called Dragon Vale! Simple but beautiful joys! I'm looking for a fabulous going away present for my friend. It's a good day. And since we get so few absolutely perfect days like today here where I live I'm going to go outside and enjoy it!
Sunday, May 6, 2012
Life Plans
Yesterday, I got to go to my friends graduation. I've only known her for almost 2 years now and I yet I feel like I've known her forever. We share so many things in common. Shortly after she moved here she broke her femur. While she took a little time off to heal she went back to school sooner than I thought she should. I'm in pain 24/7 and I couldn't understand why she would willingly inflict more pain on herself.
I have been thinking about going back to school since before I was inflicted with RSD 8 years ago. Of course my original goal was to get a quick degree like dental assisting so that I could move to NYC that much quicker. Well, you know the story.. I got RSD and plans change. I've been thinking about going back to school for awhile. But, it's hard because I have to factor things into my decision making like: Will I have the stamina to make it through this many classes? Will my pain be manageable enough to get through all the coursework? With all these extra variables it became a daunting task So, I just kept putting it off.
I've been trying to get a life plan going again. Trying to find a new career, what school to go to. I decided that I'm going to go into the field of Social Work. It is also the field that my friend just graduated in. Seeing her graduate, knowing everything she had to overcome to get there, gave me the inspiration to go back to school. Try to start over and make a new life for myself.
I have been thinking about going back to school since before I was inflicted with RSD 8 years ago. Of course my original goal was to get a quick degree like dental assisting so that I could move to NYC that much quicker. Well, you know the story.. I got RSD and plans change. I've been thinking about going back to school for awhile. But, it's hard because I have to factor things into my decision making like: Will I have the stamina to make it through this many classes? Will my pain be manageable enough to get through all the coursework? With all these extra variables it became a daunting task So, I just kept putting it off.
I've been trying to get a life plan going again. Trying to find a new career, what school to go to. I decided that I'm going to go into the field of Social Work. It is also the field that my friend just graduated in. Seeing her graduate, knowing everything she had to overcome to get there, gave me the inspiration to go back to school. Try to start over and make a new life for myself.
Friday, May 4, 2012
Friends
Friends and friendships are so important when you are going through a rough time. I have always been an introvert, always the shy kid, never spoke up in class. So making friends was always a challenge for me. When I first became disabled I had several friends. Friends from work, friends from my previous workplace, even friends across the country! Slowly, they started fading from my life. I only have 2 friends left after all was said and done.
Then I slowly started making new friends. Mostly through the Church, a couple were my mom's friends. I enjoyed spending time with them, although it was different. I could no longer be gone all day, my stamina was only a few hours at most. It was fun for awhile, I was going out for outings 2 sometimes 3 times a week. Then one by one they started to get too busy too. There was one woman who has hung around and she has been an amazing friend! Even though she's in her 80's she has way more energy and stamina than I do.
Then I met a new friend through a new church. She stayed with us when she broke her femur. She stayed with us because her family is back east and her apartment was on the second floor. We became really close. And now she's done with school. She got a job offer out of the area and took it. So, now I have to say good by to another friend. It is just so hard to keep losing friends. I have enough loss in my life. I've lost: my health, my future, my body looking the way I want it to, my ability to function on my own, even my intelligence. Losing friends is just the final straw. I feel like I have done something, which in some cases is not the truth but I still can't help feeling insecure. I just hate all the loss.
Then I slowly started making new friends. Mostly through the Church, a couple were my mom's friends. I enjoyed spending time with them, although it was different. I could no longer be gone all day, my stamina was only a few hours at most. It was fun for awhile, I was going out for outings 2 sometimes 3 times a week. Then one by one they started to get too busy too. There was one woman who has hung around and she has been an amazing friend! Even though she's in her 80's she has way more energy and stamina than I do.
Then I met a new friend through a new church. She stayed with us when she broke her femur. She stayed with us because her family is back east and her apartment was on the second floor. We became really close. And now she's done with school. She got a job offer out of the area and took it. So, now I have to say good by to another friend. It is just so hard to keep losing friends. I have enough loss in my life. I've lost: my health, my future, my body looking the way I want it to, my ability to function on my own, even my intelligence. Losing friends is just the final straw. I feel like I have done something, which in some cases is not the truth but I still can't help feeling insecure. I just hate all the loss.
Thursday, May 3, 2012
Scary Age
I'm sure many of you out there have watched Sex & The City. I remember many episodes of this fantastic show but there are a couple that stand out as I go through this journey.
The first episode is "Agony and the Ex-tacy". In this episode they talk about getting older and being alone, no soul mates. I remember watching this episode 11 years ago and thinking how far off 35 sounded. I remember thinking what my life was going to be like at 35. I was going to be married and having kids. So, now at 35 and not married with kids I have to reexamine things. And living in society today it is very hard to be different. Which brings me to the next episode.
The second episode is called "Catch-38". In this episode Carrie has to reevaluate her priorities when she falls in love with the Russian. She has to decide if she wants a baby or a man. But it also brings up questions we face: Do we think we want babies and marriages or do we think we should have babies and marriages? And where is the peer pressure really coming from? Is it external or internal?
I think that looking at these episodes after veering off the "perfect" path I was gliding down has been really eye opening. I need to find a new path to go towards. Maybe it won't look like my original one, but who said life is perfect. I truly doubt that even if I did remain healthy I would have had my life turn out exactly like I wanted it to. Why? Because that is life. It changes every day. And I think the hardest thing for me, besides the pain of course, has been letting go of all my past dreams and wishes. Society is hard to live up to. It is hard to know where it's peer pressure stops and your own personal pressure begins. It's indeed a catch-22.
The first episode is "Agony and the Ex-tacy". In this episode they talk about getting older and being alone, no soul mates. I remember watching this episode 11 years ago and thinking how far off 35 sounded. I remember thinking what my life was going to be like at 35. I was going to be married and having kids. So, now at 35 and not married with kids I have to reexamine things. And living in society today it is very hard to be different. Which brings me to the next episode.
The second episode is called "Catch-38". In this episode Carrie has to reevaluate her priorities when she falls in love with the Russian. She has to decide if she wants a baby or a man. But it also brings up questions we face: Do we think we want babies and marriages or do we think we should have babies and marriages? And where is the peer pressure really coming from? Is it external or internal?
I think that looking at these episodes after veering off the "perfect" path I was gliding down has been really eye opening. I need to find a new path to go towards. Maybe it won't look like my original one, but who said life is perfect. I truly doubt that even if I did remain healthy I would have had my life turn out exactly like I wanted it to. Why? Because that is life. It changes every day. And I think the hardest thing for me, besides the pain of course, has been letting go of all my past dreams and wishes. Society is hard to live up to. It is hard to know where it's peer pressure stops and your own personal pressure begins. It's indeed a catch-22.
Tuesday, May 1, 2012
Friends Are Nice
Today I got to have coffee with a good friend of mine. We got to catch up about what had been going on in our lives since we last met. She told me about her trip to Mexico with AMOR housing and showed me pictures of the house she built, along with many other volunteers of course. AMOR is an organization that builds houses for families in need most of the time in Mexico. http://www.amorblog.org/ I got to tell her about the ins and outs of my life. Like my dog getting hurt, my blog taking off,and getting some upsetting news from my case worker. And as we shared and talked we drank our coffee.
We went to Starbucks because that's our FAVORITE coffee shop! Before we even got to the front of the line, we figured out we both wanted to try the new drink. Great minds think alike I guess. It was a delicious concoction call Mocha Cookie Crumble Frappuccino. It was so good. Nothing like a good drink and a good time with a friend to replenish the soul.
We went to Starbucks because that's our FAVORITE coffee shop! Before we even got to the front of the line, we figured out we both wanted to try the new drink. Great minds think alike I guess. It was a delicious concoction call Mocha Cookie Crumble Frappuccino. It was so good. Nothing like a good drink and a good time with a friend to replenish the soul.
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