Here we are again in the cold cold winter of Utah. EDS makes you feel extremely sore, stiff, and exhausted. My fingers feel swollen and are hard to move. I spent the last week in St. George Utah. It is almost to Nevada so the weather was much nicer.
I had an appointment with a hand doctor recently and he suggested injections into the joints of my hands and fingers. This will apparently reduce the swelling so I can be fitted for the EDS finger rings "splints" to stabilize the fragile joints. I could see those HUGE needles gong straight into such small joints.
If any of my fellow EDS bloggers have has these injections and wear the finger splints could you send me an email and give me some feedback?
Attitude is Everything... BE HAPPY
Wednesday, December 1, 2010
Wednesday, November 24, 2010
Hit me goal
I said I would update when I reached my gaol and I DID!!! So excited about it. Not much to say about i right now but I lost 16 pounds the last time I checked.
Attitude is Everything... BE HAPPY
Attitude is Everything... BE HAPPY
Saturday, November 13, 2010
Lots of Changes
So I have been busy and a lot has been changing and happening in my life. I don't have a lot of access to the computer so it makes posting kind of difficult. I have a lot going on so I am going to just put my thoughts and feelings out there.
I have been reading A LOT of other EDS blogs and I am finding one common thing. Not all of them but a lot of them. There is a lot of negativity that seems to be coming along with having a disability. Each of our experiences are different, but our attitude really is a HUGE factor in how we deal with things. I don't say that "Attitude is Everything" to sound "cheesy" but it really is.
I make a conscious effort to go about my day without the "pity party". I know that having EDS stinks and at times we all can feel hopeless and lost, but there really is so much good that can come from this too.
For example.... As I read posts from other EDS bloggers I gain strength and realize that I am not alone. You also realize that A LOT!!!! of people were told that doctors didn't know what to do, or hear from people that "it is all in your head". It certainly is NOT all in our heads. This is a very real condition that we live with on a daily basis. It never goes away, and it is constantly on our minds.
I have a LOVE for shoes. My daughter has asked that when I die I leave everything in my closet to her LOL!! Well us shorter girls like heals. They are a little more difficult to wear when you have to think about not falling over because of your balance. Well I still wear them and they are fabulous LOL! So laugh and don't take everything so seriously.
I enjoy reading the posts about daily things that we as a group of people are doing. That's why I feel strongly about being honest and open about how I feel. So since I am on feelings .... Right now they are mixed. I am going through a BRUTAL MEAN divorce. Everything I have ever done to try to better myself is now being somehow twisted into something it is not.
FOR EXAMPLE..... After I knew that the opiate medications were starting to deteriorate my body I became proactive. Meeting with my Dr.'s and going into a medical detox seems pretty responsible. Now I am being played and it is being twisted because of divorce that I abused drugs???? This really bothers me. I do my best to remain positive. I have my moments that seem to become overwhelming, but I have a wonderful support system.
When all you know is pain you learn ways to block it out to a point. I know I have said it before, but My CVR machine is my power tool. I use that machine about everyday to stay focused for action and in a positive mindset. Our brains are so powerful and we have so much power to control different problems or symptoms we may be experiencing.
So I want to complain a little and I want to say thank you as well to my fellow EDS bloggers.
YES... we all hurt
YES... We feel tired of the treatments, plans, and experimental things
But let's try to stay positive because in the end YOU HAVE THE POWER INSIDE YOURSELF. We grow. We learn. We help each other stay on a path of positive healing and health.
Attitude is Everything... BE HAPPY
I have been reading A LOT of other EDS blogs and I am finding one common thing. Not all of them but a lot of them. There is a lot of negativity that seems to be coming along with having a disability. Each of our experiences are different, but our attitude really is a HUGE factor in how we deal with things. I don't say that "Attitude is Everything" to sound "cheesy" but it really is.
I make a conscious effort to go about my day without the "pity party". I know that having EDS stinks and at times we all can feel hopeless and lost, but there really is so much good that can come from this too.
For example.... As I read posts from other EDS bloggers I gain strength and realize that I am not alone. You also realize that A LOT!!!! of people were told that doctors didn't know what to do, or hear from people that "it is all in your head". It certainly is NOT all in our heads. This is a very real condition that we live with on a daily basis. It never goes away, and it is constantly on our minds.
I have a LOVE for shoes. My daughter has asked that when I die I leave everything in my closet to her LOL!! Well us shorter girls like heals. They are a little more difficult to wear when you have to think about not falling over because of your balance. Well I still wear them and they are fabulous LOL! So laugh and don't take everything so seriously.
I enjoy reading the posts about daily things that we as a group of people are doing. That's why I feel strongly about being honest and open about how I feel. So since I am on feelings .... Right now they are mixed. I am going through a BRUTAL MEAN divorce. Everything I have ever done to try to better myself is now being somehow twisted into something it is not.
FOR EXAMPLE..... After I knew that the opiate medications were starting to deteriorate my body I became proactive. Meeting with my Dr.'s and going into a medical detox seems pretty responsible. Now I am being played and it is being twisted because of divorce that I abused drugs???? This really bothers me. I do my best to remain positive. I have my moments that seem to become overwhelming, but I have a wonderful support system.
When all you know is pain you learn ways to block it out to a point. I know I have said it before, but My CVR machine is my power tool. I use that machine about everyday to stay focused for action and in a positive mindset. Our brains are so powerful and we have so much power to control different problems or symptoms we may be experiencing.
So I want to complain a little and I want to say thank you as well to my fellow EDS bloggers.
YES... we all hurt
YES... We feel tired of the treatments, plans, and experimental things
But let's try to stay positive because in the end YOU HAVE THE POWER INSIDE YOURSELF. We grow. We learn. We help each other stay on a path of positive healing and health.
Attitude is Everything... BE HAPPY
Thursday, October 14, 2010
It has been a long time
Attitude is Everything... BE HAPPY
Well I am still alive and kickin'. I know it has been a long time since I blogged but I wanted to put a few thoughts down.
If you read my other blog... www.thesipefamilyblog.blogspot.com you know what is going on in the other aspect of my life. It is hard and sad and seems so wrong. Well my personal life affects my health so I am taking precautions to help keep me strong and keeping focused on the light at the end of the tunnel. The light seems bleak and dim at times but I know that it is there. If I keep my eye on it I will succeed. I have no doubt.
There are many studies that I have read about withdrawl and recovery from prescription drugs and street drugs. Women in particular have a naturally higher body fat % than men. The rate of women who relapse seems to be higher than men. After much reading and studying I have found that many studies say that any type of drug stores in our fat cells. That would make since why women have a harder and more difficult time in detoxing off of any type of substance.
By focusing our minds and staying in a positive energy it really helps.
Since the divorce drama I have gained 20 pounds. People say " Oh Alyssa don't worry you look great". I probably do but it sure doesn't feel good. Any extra weight hurts my joints. I don't want to carry around a 20 pound sack of potatoes. Why do that when I can do something about it.
So I am dedicated and determined to loose the weight naturally and healthy. I have a lot I want to improve in myself. Taking care of myself will be extremely important for my future. I want to be healthy all around. Why not cleanse myself for real and start fresh. Hell I did it with prescription pain killers and have been successful.
I am 5 days in and will update soon :-)
Well I am still alive and kickin'. I know it has been a long time since I blogged but I wanted to put a few thoughts down.
If you read my other blog... www.thesipefamilyblog.blogspot.com you know what is going on in the other aspect of my life. It is hard and sad and seems so wrong. Well my personal life affects my health so I am taking precautions to help keep me strong and keeping focused on the light at the end of the tunnel. The light seems bleak and dim at times but I know that it is there. If I keep my eye on it I will succeed. I have no doubt.
There are many studies that I have read about withdrawl and recovery from prescription drugs and street drugs. Women in particular have a naturally higher body fat % than men. The rate of women who relapse seems to be higher than men. After much reading and studying I have found that many studies say that any type of drug stores in our fat cells. That would make since why women have a harder and more difficult time in detoxing off of any type of substance.
By focusing our minds and staying in a positive energy it really helps.
Since the divorce drama I have gained 20 pounds. People say " Oh Alyssa don't worry you look great". I probably do but it sure doesn't feel good. Any extra weight hurts my joints. I don't want to carry around a 20 pound sack of potatoes. Why do that when I can do something about it.
So I am dedicated and determined to loose the weight naturally and healthy. I have a lot I want to improve in myself. Taking care of myself will be extremely important for my future. I want to be healthy all around. Why not cleanse myself for real and start fresh. Hell I did it with prescription pain killers and have been successful.
I am 5 days in and will update soon :-)
Saturday, July 31, 2010
My Head
Since I haven't had access to the computer very often it has been hard to keep up on all off the different things going on in life. I wanted to take a minute and talk about what happened to my head.
On a Friday morning I woke up very lethargic. I was having a really hard time getting a satisfying breath. My body was very achy and weak. I had a meeting that I called and rescheduled because I couldn't get the strength to get out of bed.
Finally I got up and was sick. ( With EDS I seem to have a lot of stomach and intestinal discomfort ). I honestly think the opioid medications that were used for so long damaged my GI track. I started to faint. I fainted several times and ended up making it to the kitchen.
The next thing I knew I was on the floor of my living room. My head hurt really bad. I reached up to touch the area of pain and my hand was covered in blood.
I was able to see my cell phone across the floor and called the last call received. A good friend showed up with in minutes along with the neighbors downstairs.
My head was covered in blood and I could feel the cut. I had hit my head on the corner of a bench. Cutting into the back of my head. Because of my EDS and healing and bruising issues my friend called someone who knew a lot about my past.
This next comment really hurt my feelings. I have really worked hard to not use major medication for pain. This just felt like a slap in the face.
My friend asks, "Is there anything about stitches or bleeding I should know about, It looks like she needs stitches."
Voice of the past says " well is she on drugs? Or has she been drinking? Because she has OD'ed before."
Friend says, " No I checked her eyes and there is no alcohol".
So after this conversation I knew I needed to make a decision. Strangely enough When I felt the initial pain in my head and I woke up my thoughts were this. PAIN.... NO MEDICATION!
I was barely conscious and was telling myself and those around me that I was not going to take the pain medication. Absolutely NOT!!! I have worked to hard to flush it all down the toilet. I am not saying that if you need medical attention don't do it. Not that at all. I am saying for me personally, If I could take a minute and evaluate the situation and not need to go to the hospital, have stitches and medication. Then I was not going.
On the subject of OD'ing...... Let me take a minute and address that comment. Another stab to me.
Those of you with a chronic pain condition know how the effects of opioid medication work. With EDS I feel like I have a zip tie pulling around everyone of my affected joints. Achy, constant pressure, sore, tight, but yet I am very loose in my joints. Hard to explain but you get the idea.
You take the medication... It takes the pain away. Eventually your tolerance goes up, and new medications are tried in a trial and error plan. What will work and what doesn't. But it is hard to know really if one things is working because you have the effects of the other medications. Eventually you are 100 lbs and have the medication tolerance of a Sumo Wrestler.
I DID NOT PURPOSELY OD ON PAIN MEDICATION!!!! When you are that medicated you don't realize time anymore, or how much you have taken. Life stands still.You just want relief.
I have been out of the DETOX Hospital since February and had only the one relapse shortly after. That was not intentional and extremely upsetting hearing it as a slap in the face ...Is she on drugs? She has OD'ed before And drinking to numb the the pain does not work. All of the damage to my GI track makes "getting drunk" painful. So why would I be drunk, and why would I be drinking at 11 AM ?
OK now that that is out of my system
I feel so good that I have been strong enough to tackle the demon, kick his butt and move on.
Attitude is Everything... BE HAPPY
On a Friday morning I woke up very lethargic. I was having a really hard time getting a satisfying breath. My body was very achy and weak. I had a meeting that I called and rescheduled because I couldn't get the strength to get out of bed.
Finally I got up and was sick. ( With EDS I seem to have a lot of stomach and intestinal discomfort ). I honestly think the opioid medications that were used for so long damaged my GI track. I started to faint. I fainted several times and ended up making it to the kitchen.
The next thing I knew I was on the floor of my living room. My head hurt really bad. I reached up to touch the area of pain and my hand was covered in blood.
I was able to see my cell phone across the floor and called the last call received. A good friend showed up with in minutes along with the neighbors downstairs.
My head was covered in blood and I could feel the cut. I had hit my head on the corner of a bench. Cutting into the back of my head. Because of my EDS and healing and bruising issues my friend called someone who knew a lot about my past.
This next comment really hurt my feelings. I have really worked hard to not use major medication for pain. This just felt like a slap in the face.
My friend asks, "Is there anything about stitches or bleeding I should know about, It looks like she needs stitches."
Voice of the past says " well is she on drugs? Or has she been drinking? Because she has OD'ed before."
Friend says, " No I checked her eyes and there is no alcohol".
So after this conversation I knew I needed to make a decision. Strangely enough When I felt the initial pain in my head and I woke up my thoughts were this. PAIN.... NO MEDICATION!
I was barely conscious and was telling myself and those around me that I was not going to take the pain medication. Absolutely NOT!!! I have worked to hard to flush it all down the toilet. I am not saying that if you need medical attention don't do it. Not that at all. I am saying for me personally, If I could take a minute and evaluate the situation and not need to go to the hospital, have stitches and medication. Then I was not going.
On the subject of OD'ing...... Let me take a minute and address that comment. Another stab to me.
Those of you with a chronic pain condition know how the effects of opioid medication work. With EDS I feel like I have a zip tie pulling around everyone of my affected joints. Achy, constant pressure, sore, tight, but yet I am very loose in my joints. Hard to explain but you get the idea.
You take the medication... It takes the pain away. Eventually your tolerance goes up, and new medications are tried in a trial and error plan. What will work and what doesn't. But it is hard to know really if one things is working because you have the effects of the other medications. Eventually you are 100 lbs and have the medication tolerance of a Sumo Wrestler.
I DID NOT PURPOSELY OD ON PAIN MEDICATION!!!! When you are that medicated you don't realize time anymore, or how much you have taken. Life stands still.You just want relief.
I have been out of the DETOX Hospital since February and had only the one relapse shortly after. That was not intentional and extremely upsetting hearing it as a slap in the face ...Is she on drugs? She has OD'ed before And drinking to numb the the pain does not work. All of the damage to my GI track makes "getting drunk" painful. So why would I be drunk, and why would I be drinking at 11 AM ?
OK now that that is out of my system
I feel so good that I have been strong enough to tackle the demon, kick his butt and move on.
Attitude is Everything... BE HAPPY
Sunday, July 18, 2010
I am back
A lot of people have been asking "where did you go? Did you fall off the face of the earth." No I am OK. I moved a few months ago and have to move again in a few days. So I have not had computer access. I have a lot to cover but will find computers to do that. There is just to much to cover in a few minutes. I have had to deal with a lot but am finding a lot of strength inside myself. I am really OK and continue to find more peace everyday.
I was watching that cute movie JULIE and JULIA with my kids last night. I remember her saying as she blogged " Does anyone read this? Does anyone care? There has to be someone out there that needs me."
Well no matter who you are or why you read my blog. I hope I can help in some way.
I will go over lots of things very soon.
Attitude is Everything... BE HAPPY
I was watching that cute movie JULIE and JULIA with my kids last night. I remember her saying as she blogged " Does anyone read this? Does anyone care? There has to be someone out there that needs me."
Well no matter who you are or why you read my blog. I hope I can help in some way.
I will go over lots of things very soon.
Attitude is Everything... BE HAPPY
Wednesday, May 19, 2010
Missing My Expression
Attitude is Everything... BE HAPPY
I miss my expression through music. I have been a classically trained violinist since I was nine years old. Music has always been an incredibly important part of my life. It is a magic "cure all" for any problem or emotion I have ever had.
For my whole life I have gone to my instrument to create and learn. I have not been able to touch a violin for over a year. My beautiful instrument was broken and I have not yet been able to repair it. I would play my violin for hour after hour everyday as a child and into my adulthood. I love it so much that when I was a child my parents would take away my violin as punishment instead of grounding me. I would open the window in my violin room and play and play. I loved to just improvise and be creative. I never liked to read music. I loved to close my eyes and play. I never had to look at the strings. My fingers just knew where to perfectly land.
I know you must be thinking " why is she talking about this" Trust me it ties in.
Year after year of twisting my wrist put a lot of stress and wear on the joints in the fingers, left wrist and hand. My left hand always feels very painful and swollen. Pain shoots up my fingers and into my wrist constantly. It is very discouraging because I know that there is damage in the left hand and I need surgery.
My biggest fear of surgery is not the actually surgery itself but the real fear is waking up on pain medication and needing to use pain medication after. It worries me so much that I keep putting off the doctor knowing they will tell me I need the surgery.
So i keep living with the pain and ignoring the problem. But I want so badly to be able to have the energy in my hands to play violin again. It is such an important part of my life.
I can take any aggression, anger, sadness, anxiety, excitement, happiness etc. out on my violin.
I kind of feel stumped on what to do.
Do I get a surgery that could potentially give me back strength and mobility and potentially put myself in the path of prescription pain medication, or do I not play again and keep trying to ignore the increasing pain and degeneration of my hand.
I have a lot of confidence in my ability to not use medication right now, but I don't know if I am willing to play a big gamble on my success.
Getting off of the medications that actually helps manage the pain of EDS is so hard. The pain NEVER goes away. It is always there. Constant as a reminder of the condition. It would be so amazing to not feel pain on a continuous basis. I actually can't imagine what it would be like for it to completely be gone. I do not ever remember not feeling some level of pain.
If I could explain the pain EDS causes I would but it is sort of indescribable. The middle of my back is always on FIRE. My fingers bend in many unnatural directions, my jaw always feels tight like I am clinching my teeth when I really am not.
But I want and need my creative outlet back and I am afraid that if I don't have a surgery to repair the damage that one day it will be to late. I am also worried that with one surgery comes another. A shoulder again, a hip a knee, my back. So I just am stumped on what to do.
I miss my expression through music. I have been a classically trained violinist since I was nine years old. Music has always been an incredibly important part of my life. It is a magic "cure all" for any problem or emotion I have ever had.
For my whole life I have gone to my instrument to create and learn. I have not been able to touch a violin for over a year. My beautiful instrument was broken and I have not yet been able to repair it. I would play my violin for hour after hour everyday as a child and into my adulthood. I love it so much that when I was a child my parents would take away my violin as punishment instead of grounding me. I would open the window in my violin room and play and play. I loved to just improvise and be creative. I never liked to read music. I loved to close my eyes and play. I never had to look at the strings. My fingers just knew where to perfectly land.
I know you must be thinking " why is she talking about this" Trust me it ties in.
Year after year of twisting my wrist put a lot of stress and wear on the joints in the fingers, left wrist and hand. My left hand always feels very painful and swollen. Pain shoots up my fingers and into my wrist constantly. It is very discouraging because I know that there is damage in the left hand and I need surgery.
My biggest fear of surgery is not the actually surgery itself but the real fear is waking up on pain medication and needing to use pain medication after. It worries me so much that I keep putting off the doctor knowing they will tell me I need the surgery.
So i keep living with the pain and ignoring the problem. But I want so badly to be able to have the energy in my hands to play violin again. It is such an important part of my life.
I can take any aggression, anger, sadness, anxiety, excitement, happiness etc. out on my violin.
I kind of feel stumped on what to do.
Do I get a surgery that could potentially give me back strength and mobility and potentially put myself in the path of prescription pain medication, or do I not play again and keep trying to ignore the increasing pain and degeneration of my hand.
I have a lot of confidence in my ability to not use medication right now, but I don't know if I am willing to play a big gamble on my success.
Getting off of the medications that actually helps manage the pain of EDS is so hard. The pain NEVER goes away. It is always there. Constant as a reminder of the condition. It would be so amazing to not feel pain on a continuous basis. I actually can't imagine what it would be like for it to completely be gone. I do not ever remember not feeling some level of pain.
If I could explain the pain EDS causes I would but it is sort of indescribable. The middle of my back is always on FIRE. My fingers bend in many unnatural directions, my jaw always feels tight like I am clinching my teeth when I really am not.
But I want and need my creative outlet back and I am afraid that if I don't have a surgery to repair the damage that one day it will be to late. I am also worried that with one surgery comes another. A shoulder again, a hip a knee, my back. So I just am stumped on what to do.
Saturday, May 1, 2010
Change
Attitude is Everything... BE HAPPY
So many people lately have said " Alyssa you have changed" I find it interesting who is saying what and why...
Yes I have changed. I am confident in myself. I stand up for my self. I will not be put down.
Is that wrong that I have embraced who I am inside and find confidence in a positive change? ABSOLUTELY NOT!
I have had many struggles in my life. Many challenges and decisions that have really effected my life. But if I didn't have them I would never grow and develop the person I am now because of those times.
I have really taken a huge step back and looked at my life and the choices I have made. They have not all been good. In fact a hand full have been not so great. But at least I recognize them and see where I can grow and improve.
There will always be people in my life that with judge my past.They will judge my present and future before anything happens, and they still feel it is OK to make a judgment call on me. But they have never lived my life. I am the one that has been there.
I see peoples struggles and difficulties so differently now. I want to help. I want them to have hope and find peace in themselves.
Nobody is perfect. Nobody will be or can ever expect perfection out of themselves or other. We are human we make mistakes. If we keep making mistakes and never learn from them, then that is a problem. But if we recognize and don't beat our selves up because of unrealistic expectations that we put on ourselves and we feel from others, we will be a lot better off.
So I am finding strength and confidence in difficult times. I know what pushes my buttons now. So I have changed how I react. I am a lot calmer and accepting of advice and what others have to say.
I feel good
So many people lately have said " Alyssa you have changed" I find it interesting who is saying what and why...
Yes I have changed. I am confident in myself. I stand up for my self. I will not be put down.
Is that wrong that I have embraced who I am inside and find confidence in a positive change? ABSOLUTELY NOT!
I have had many struggles in my life. Many challenges and decisions that have really effected my life. But if I didn't have them I would never grow and develop the person I am now because of those times.
I have really taken a huge step back and looked at my life and the choices I have made. They have not all been good. In fact a hand full have been not so great. But at least I recognize them and see where I can grow and improve.
There will always be people in my life that with judge my past.They will judge my present and future before anything happens, and they still feel it is OK to make a judgment call on me. But they have never lived my life. I am the one that has been there.
I see peoples struggles and difficulties so differently now. I want to help. I want them to have hope and find peace in themselves.
Nobody is perfect. Nobody will be or can ever expect perfection out of themselves or other. We are human we make mistakes. If we keep making mistakes and never learn from them, then that is a problem. But if we recognize and don't beat our selves up because of unrealistic expectations that we put on ourselves and we feel from others, we will be a lot better off.
So I am finding strength and confidence in difficult times. I know what pushes my buttons now. So I have changed how I react. I am a lot calmer and accepting of advice and what others have to say.
I feel good
Saturday, April 24, 2010
Everyday honestly
Attitude is Everything... BE HAPPY
I have had a lot of email lately asking me " Alyssa, why haven't you updated you blog"... Well I went over it in my mind and thought.... Do I want people to know what is really going on with me, or do I want to make sure that they hear no negative and only positive? Then I remembered the promise I made to myself... I WILL ALWAYS BE HONEST AND NOT CARE WHO READS THIS, IT JUST MIGHT HELP SOMEONE!
Well my life has been changing. For quite a long time. It is an emotional roller coaster that I am coming to grips with. I don't really know how or why I got here but I will do my best to embrace where I am going.
So for now this is what I have to say.....For a really long time I have looked in the mirror wondering who I saw. Is the face I saw looking back at me ... me
She is a collaboration of many years. Many trials. Many tears. Many decisions. Many fears, a lot of getting to know... me
I am happy with the the women that looks back at me. I know that she has a lot to offer, and give to others. I know that she is a good mother, friend, sister, daughter, aunt, partner and much more.
I might not be what the normal says to be, but I am real. I am a good person and happy about who I am. I want to help other people. I want them to learn from my mistakes and grow. I want to be involved in their growth and development. I want them to know me and know that I have been there and that I understand and will not judge them.
I have had a lot of email lately asking me " Alyssa, why haven't you updated you blog"... Well I went over it in my mind and thought.... Do I want people to know what is really going on with me, or do I want to make sure that they hear no negative and only positive? Then I remembered the promise I made to myself... I WILL ALWAYS BE HONEST AND NOT CARE WHO READS THIS, IT JUST MIGHT HELP SOMEONE!
Well my life has been changing. For quite a long time. It is an emotional roller coaster that I am coming to grips with. I don't really know how or why I got here but I will do my best to embrace where I am going.
So for now this is what I have to say.....For a really long time I have looked in the mirror wondering who I saw. Is the face I saw looking back at me ... me
She is a collaboration of many years. Many trials. Many tears. Many decisions. Many fears, a lot of getting to know... me
I am happy with the the women that looks back at me. I know that she has a lot to offer, and give to others. I know that she is a good mother, friend, sister, daughter, aunt, partner and much more.
I might not be what the normal says to be, but I am real. I am a good person and happy about who I am. I want to help other people. I want them to learn from my mistakes and grow. I want to be involved in their growth and development. I want them to know me and know that I have been there and that I understand and will not judge them.
Monday, April 12, 2010
Emotions and Pain
Attitude is Everything... BE HAPPY
When you really break it down, yes it makes sense, Emotions are linked with pain.
A little experiment I have been putting on myself lately is this.... I am consciously becoming aware of times when I am in less pain than others. I notice when I am around certain people or places that are secure and comfortable, happy, full of laughter or exciting, that I don't focus so much on the pain. Now that I am consciously thinking about it, there have been a few times that I have not thought about it at all.
When I am in a tense, unhappy, chaotic place, situation, or around negative people, the focus comes back to the pain.
The pain is never actually gone, but how much I focus on it is another thing.
When the weather is going to change, I should be the weather man. I feel it in all my bones days before. I have been working really hard lately and taking the energy that I have and using it full force instead of pacing myself. So last night I crashed at 8pm. I was so tired it overwhelmed me. I just wanted to be in a dark place, away from everything and be alone.
I went to bed and put my CVR on as I do every night. As I was going through the session and achieving the relaxing state that I needed, all of a sudden I could hear kids and dogs and the normal sounds of the evening in the background. These are all normal sounds expected to be heard in a house full of people and animals. But I realized I was all tensed up in a ball. All of a sudden my focus went to the emotion of the moment and it caused stress and anxiety. That stress and anxiety caused me to focus on the pain. Then I paused for a minute and asked that the door be closed. When nobody heard me I yelled "Please Close my door". Yelling caused even more awareness of pain.( in fact just writing this makes me focus on it and I am paying attention to the pain in my hands and the head ache.)
So yelling and screaming don't help! Even as a mother with dogs and kids, screaming yelling and fighting does the exact opposite of what you are trying to achieve. HARMONY! We need to take time everyday for ourselves. This is not selfish. Putting yourself first actually makes you better. If you don't take care of you, then how can you take care of others.
It is important for your health and happiness.
I used to think, "If I yell than someone will hear me". Wrong! It just turns up the tension in the room causing everything to shut down and the walls of communication are built and then in reality.... NO ONE IS LISTENING!
Getting back to my pain is linked with emotion topic... So tonight I went for an infrared body wrap with CVR session together. It helped so much. The setting was calm, soothing, patient and harmonious. I used the ( How to reduce stress and anxiety) series. I needed to be reminded that I am in control of me. Not the pain, not the world around me.. I am in control.
As I was listening to the session it made sense. I was listening to a very soothing voice and subconsciously he was saying things to me to think about the positive aspects of who I am and taking care of my body. Not one negative word was spoken.
I was not focusing any longer on the pain that I had originally come in for. My joints were warm, calmed, and I was able to really focus on achieving the goal I had set for myself. Positive situations, people, space, energy, have so much to do with where your focus is and what your focus is on.
Another situation that I have become totally conscious of is laughter. Laughter is like natures tranquiler. When we laugh we are suddenly not anxious, depressed, or focusing on the pain. Our brains release chemicals that stimulate us instead of depress us.
If you know me, you would know that I will laugh at just about anything. I in fact love to laugh.
I have had a lot on my mind lately, which causes stress and anxiety. Pain causes stress and anxiety. Stress and anxiety produce depression. Depression makes us focus on the pain, in turn repeating the ugly cycle of focusing on the pain.
Changing the situation , atmosphere, people, or whatever the case may be puts the focus elsewhere.
So emotion can be used to focus on the bad or focus on the good. Let's weigh the pros and cons of using emotions for bad and emotions for good.
Emotion Pro
- laughter
- focus on positive
- feel better
- look better ( people can read every emotion you have like a red flag on you forehead)
- live longer
- be more productive
- seek harmony, peace, and security
- have more friends
- be a better partner
- be a positive example
- sleep better
- look better ( did you know it takes more muscles in your face and neck to frown than it does to smile)
( so you get my point )
Cons of emotion
- no sleep
- focus on pain
- look bad
- people don't want to be around you
Obviously using emotion to help control pain, anxiety, fear, and depression in a positive way gives us so much more than focusing on the negative.
Positive affirmations everyday. Constant focus on the good will attract happiness, peace, and harmony.
So go ahead and LAUGH! It is natures medicine.
I like this poem about laughter...
Life can be hard to live sometimes
In the daily rush to do this and do that
Let us not forget to use the free gift we have
The gift of laughter
When times are hard, when all you can see is the dark
It is easier to close your eyes and just give up
Start looking for the rainbow
That brightens even the greyest sky
Even in moments so sad
Find something that will make you smile
Remember times that make you happy
Remember the clown that made you laugh
Make this journey a memorable one
Not just for yourselves but for others too
And do not forget to use your free gift
The gift of laughter
By Shaheen Darr
When you really break it down, yes it makes sense, Emotions are linked with pain.
A little experiment I have been putting on myself lately is this.... I am consciously becoming aware of times when I am in less pain than others. I notice when I am around certain people or places that are secure and comfortable, happy, full of laughter or exciting, that I don't focus so much on the pain. Now that I am consciously thinking about it, there have been a few times that I have not thought about it at all.
When I am in a tense, unhappy, chaotic place, situation, or around negative people, the focus comes back to the pain.
The pain is never actually gone, but how much I focus on it is another thing.
When the weather is going to change, I should be the weather man. I feel it in all my bones days before. I have been working really hard lately and taking the energy that I have and using it full force instead of pacing myself. So last night I crashed at 8pm. I was so tired it overwhelmed me. I just wanted to be in a dark place, away from everything and be alone.
I went to bed and put my CVR on as I do every night. As I was going through the session and achieving the relaxing state that I needed, all of a sudden I could hear kids and dogs and the normal sounds of the evening in the background. These are all normal sounds expected to be heard in a house full of people and animals. But I realized I was all tensed up in a ball. All of a sudden my focus went to the emotion of the moment and it caused stress and anxiety. That stress and anxiety caused me to focus on the pain. Then I paused for a minute and asked that the door be closed. When nobody heard me I yelled "Please Close my door". Yelling caused even more awareness of pain.( in fact just writing this makes me focus on it and I am paying attention to the pain in my hands and the head ache.)
So yelling and screaming don't help! Even as a mother with dogs and kids, screaming yelling and fighting does the exact opposite of what you are trying to achieve. HARMONY! We need to take time everyday for ourselves. This is not selfish. Putting yourself first actually makes you better. If you don't take care of you, then how can you take care of others.
It is important for your health and happiness.
I used to think, "If I yell than someone will hear me". Wrong! It just turns up the tension in the room causing everything to shut down and the walls of communication are built and then in reality.... NO ONE IS LISTENING!
Getting back to my pain is linked with emotion topic... So tonight I went for an infrared body wrap with CVR session together. It helped so much. The setting was calm, soothing, patient and harmonious. I used the ( How to reduce stress and anxiety) series. I needed to be reminded that I am in control of me. Not the pain, not the world around me.. I am in control.
As I was listening to the session it made sense. I was listening to a very soothing voice and subconsciously he was saying things to me to think about the positive aspects of who I am and taking care of my body. Not one negative word was spoken.
I was not focusing any longer on the pain that I had originally come in for. My joints were warm, calmed, and I was able to really focus on achieving the goal I had set for myself. Positive situations, people, space, energy, have so much to do with where your focus is and what your focus is on.
Another situation that I have become totally conscious of is laughter. Laughter is like natures tranquiler. When we laugh we are suddenly not anxious, depressed, or focusing on the pain. Our brains release chemicals that stimulate us instead of depress us.
If you know me, you would know that I will laugh at just about anything. I in fact love to laugh.
I have had a lot on my mind lately, which causes stress and anxiety. Pain causes stress and anxiety. Stress and anxiety produce depression. Depression makes us focus on the pain, in turn repeating the ugly cycle of focusing on the pain.
Changing the situation , atmosphere, people, or whatever the case may be puts the focus elsewhere.
So emotion can be used to focus on the bad or focus on the good. Let's weigh the pros and cons of using emotions for bad and emotions for good.
Emotion Pro
- laughter
- focus on positive
- feel better
- look better ( people can read every emotion you have like a red flag on you forehead)
- live longer
- be more productive
- seek harmony, peace, and security
- have more friends
- be a better partner
- be a positive example
- sleep better
- look better ( did you know it takes more muscles in your face and neck to frown than it does to smile)
( so you get my point )
Cons of emotion
- no sleep
- focus on pain
- look bad
- people don't want to be around you
Obviously using emotion to help control pain, anxiety, fear, and depression in a positive way gives us so much more than focusing on the negative.
Positive affirmations everyday. Constant focus on the good will attract happiness, peace, and harmony.
So go ahead and LAUGH! It is natures medicine.
I like this poem about laughter...
Life can be hard to live sometimes
In the daily rush to do this and do that
Let us not forget to use the free gift we have
The gift of laughter
When times are hard, when all you can see is the dark
It is easier to close your eyes and just give up
Start looking for the rainbow
That brightens even the greyest sky
Even in moments so sad
Find something that will make you smile
Remember times that make you happy
Remember the clown that made you laugh
Make this journey a memorable one
Not just for yourselves but for others too
And do not forget to use your free gift
The gift of laughter
By Shaheen Darr
Tuesday, April 6, 2010
Has my journey just begun?
Attitude is Everything... BE HAPPY
I am going to write this in my feelings. Not knowing or caring who is reading it. So I will say exactly what is coming to my mind as it comes.
Some days you feel defeated! Some days you feel strong. Some days you don't know why tears flow from your eyes and there is no reason to cry. Sometimes there is a reason to cry.
Some days you go minute by minute. Some days are second by second. Some, are hour by hour.
I have to take a step back and realize where I have been and the road I am traveling now.
No matter what anyone says to you...no matter what words are said to open wounds you are trying to heal... Remember that someone loves you! Even if it is a girl who writes a blog from miles away.... someone loves you!
You are not Alone. You are worth it! You do your very best everyday to be the best YOU, that YOU can be.
Remember that even in the darkest of times there is always someone that loves you, appreciates you, and would never hurt you. Even if you feel pain, or loss.. Remember that you are loved.
Love is a special thing that you can share. Love is not judgmental. Love listens. Love, loves you just the way you are. Love never asks you to change... because love, is love.
Be The Best At Whatever you are.
If you can't be a pine
on the top of the hill,
Be a shrub in the valley-
but be the best little shrub
this side of the hill;
Be a bush if you cannot be a tree.
If you can't be a bush,
be a bit of grass-
some highway happier make;
If you can't be a muskie,
then just be a bass,
but the liveliest bass
in the lake.
We can't all be captains,
we've got to be crew,
There's something for all of us here,
There's big work to do,
and there's lesser to do,
and the task we must do is the near.
If you can't be a highway
then just be a trail,
If you can't be the sun,
be a star;
It isn't by size that you win or fail-
BE THE BEST AT WHATEVER YOU ARE
- Douglas Mallcoh
Friday, April 2, 2010
I Need Heat
I do like several things about Utah. I think having four seasons is beautiful. The other day was so warm. Tulips bloomed in my yard. Finally spring has arrived. WRONG! This is Utah. It is bone chilling cold. My hands are swollen and hurt. My neck hurts. Cold weather.... PLEASE GO AWAY! If cold weather wasn't so painful for my joints I could go enjoy it.
As I sit here at 1 am I am listening to beautiful violin music. I want to play again so badly. I want to be able to pick up the violin and play for hours like I used to. It was such an emotional release to be able to be creative and make music that would just come to my mind. I miss it.
I sat with Mason tonight and had a fun experience with music. We were watching a concert on DVD, and I love to sing. Mason also loves to sing. He sings all the time. It was fun to sit there and see him learn to use his voice . I was teaching him about using your breath correctly. Using your diaphragm for power and strength.
I have noticed that during this up and down weather Mason's stress level is a lot like mine. We are happy one minute then in a ball of pain the next. Mason came unglued with emotion tonight. After the "episode" he asked me if I would please go get the CVR because he has so much pain and so much on his mind that he knew it would help. He was asleep with in minutes.
I really have been blessed with such creative children. They both are so artistic and talented.
The only reason I am still awake is because it was so cold today that I had to stay in bed. So my day and night is mixed up.
Attitude is Everything... BE HAPPY
As I sit here at 1 am I am listening to beautiful violin music. I want to play again so badly. I want to be able to pick up the violin and play for hours like I used to. It was such an emotional release to be able to be creative and make music that would just come to my mind. I miss it.
I sat with Mason tonight and had a fun experience with music. We were watching a concert on DVD, and I love to sing. Mason also loves to sing. He sings all the time. It was fun to sit there and see him learn to use his voice . I was teaching him about using your breath correctly. Using your diaphragm for power and strength.
I have noticed that during this up and down weather Mason's stress level is a lot like mine. We are happy one minute then in a ball of pain the next. Mason came unglued with emotion tonight. After the "episode" he asked me if I would please go get the CVR because he has so much pain and so much on his mind that he knew it would help. He was asleep with in minutes.
I really have been blessed with such creative children. They both are so artistic and talented.
The only reason I am still awake is because it was so cold today that I had to stay in bed. So my day and night is mixed up.
Attitude is Everything... BE HAPPY
Monday, March 29, 2010
Overcome temptation
Attitude is Everything... BE HAPPY
Today was very challenging. Not my day in general, but an anxiety that crept up on me that I did not expect.My husband had foot surgery today. Of course he has to use pain medication because it was major. Even knowing that stuff is in my house caused an anxiety I didn't expect.
So what did I do... I went directly to my CVR.
I laid on my floor in the office. It is nice and dark.
I went through the process of reducing stress,fear and anxiety,pain free, and addiction. I listened over and over for probably 2 hours.
It WORKED!!!!
DEEP BREATHS
DEEP BREATHS
I have been taking Joice's lead and listening to the ideal Image sessions.
I am starting to see myself in a different light.
A positive one.
By the way... It was 71 degrees in Utah today, and I only dislocated my right hip
once. My back is on fire, and left knee down to my foot are numb.
This is what I have to say to my body right now...
It's OK...Let it go
I don't consider myself your typical drug addict. I did what I needed to at the time. If I can know that there is pain medication that could take this pain away for just a few hours and I don't even care.
I am in control of this... It is not in control of me!
I totally understand the process of rehearsing in my mind how to handle pain naturally, except it, and WIN!
I wrapped my painful hands and went over it time and time again.
I KNOW that every house in the world needs a CVR. The "magic machine"
I have come to accept that pain it is always going to be there. It's OK.
I can do this.
I LOVE inspirational thoughts. Here is what I read every morning.
"Each morning when I open my eyes I say to myself: I, not events,
have the power to make me happy or unhappy today. I can choose
which it shall be. Yesterday is dead, tomorrow hasn't arrived yet.
I have just one day, today, and I'm going to be happy in it."
-Groucho Marx
Today was very challenging. Not my day in general, but an anxiety that crept up on me that I did not expect.My husband had foot surgery today. Of course he has to use pain medication because it was major. Even knowing that stuff is in my house caused an anxiety I didn't expect.
So what did I do... I went directly to my CVR.
I laid on my floor in the office. It is nice and dark.
I went through the process of reducing stress,fear and anxiety,pain free, and addiction. I listened over and over for probably 2 hours.
It WORKED!!!!
DEEP BREATHS
DEEP BREATHS
I have been taking Joice's lead and listening to the ideal Image sessions.
I am starting to see myself in a different light.
A positive one.
By the way... It was 71 degrees in Utah today, and I only dislocated my right hip
once. My back is on fire, and left knee down to my foot are numb.
This is what I have to say to my body right now...
It's OK...Let it go
I don't consider myself your typical drug addict. I did what I needed to at the time. If I can know that there is pain medication that could take this pain away for just a few hours and I don't even care.
I am in control of this... It is not in control of me!
I totally understand the process of rehearsing in my mind how to handle pain naturally, except it, and WIN!
I wrapped my painful hands and went over it time and time again.
I KNOW that every house in the world needs a CVR. The "magic machine"
I have come to accept that pain it is always going to be there. It's OK.
I can do this.
I LOVE inspirational thoughts. Here is what I read every morning.
"Each morning when I open my eyes I say to myself: I, not events,
have the power to make me happy or unhappy today. I can choose
which it shall be. Yesterday is dead, tomorrow hasn't arrived yet.
I have just one day, today, and I'm going to be happy in it."
-Groucho Marx
Friday, March 26, 2010
To the most special boy
Attitude is Everything... BE HAPPY
Why God Made Mothers
God knew that everybody needs
Someone to show the way,
He knew that babies need someone
To care for them each day...
He knew they needed someone sweet
To soothe their their baby cries,
To teach them how to walk and talk,
And sing them lullabies...
That's why God made mothers
He knew small children need someone
To lend a guiding hand,
To answer all their questions
And to smile and understand,
Someone to read them storybooks,
To teach them wrong from right,
To show them wonderful new games,
And hear their prayers at night...
That's why God made mothers.
You are such a special boy. I am so proud you are my son. Thank you for the privilage of being your mother
Love,
Mom
Why God Made Mothers
God knew that everybody needs
Someone to show the way,
He knew that babies need someone
To care for them each day...
He knew they needed someone sweet
To soothe their their baby cries,
To teach them how to walk and talk,
And sing them lullabies...
That's why God made mothers
He knew small children need someone
To lend a guiding hand,
To answer all their questions
And to smile and understand,
Someone to read them storybooks,
To teach them wrong from right,
To show them wonderful new games,
And hear their prayers at night...
That's why God made mothers.
You are such a special boy. I am so proud you are my son. Thank you for the privilage of being your mother
Love,
Mom
Tuesday, March 23, 2010
Be someone who finds something good in each day... Then give it to others
Attitude is Everything... BE HAPPY
The World is a looking glass and gives each person a reflection of his attitude.
I have every reason to be on pain medication for the rest of my life. I am learning an incredible realization about myself. I have the power within myself to control this pain.It doesn't mean it is going away, but I feel in control now.
There was a point that I felt like there was no reason any longer to go on.
I absolutely don't feel that anymore.
Every day when I use the CVR sessions I feel empowered. Strength builds inside of me that I never really realized that I had.
I feel like I am in my own personal space being given the most valuable information for my life and my long term success.
Opiate withdrawal is an incredibly painful, stressful, anxiety ridden experience. That little bug still crawls in my head... "drugs will take the pain away". Sure they will, but they also take your life away.
I am learning through these wonderful CVR sessions that I am in control. The drugs and the pain are not in control of me. My mind is brilliant and can overcome any obstacle that is placed in it's path.
Russell De Young says "Life's Greatest Thrill is tomorrow"
I look forward to my tomorrows now. Tomorrow is a blessing as before it was a depressing chore. There is so much to live for and experience.
Friday, March 19, 2010
Today I felt Beautiful
Attitude is Everything... BE HAPPY
Today I felt beautiful. My eyes fill with tears as I write this, but you will understand when my thoughts are complete.
I have realized that the cards I have been dealt in life are changing others lives. External beauty is nice to have, but internal beauty is beautiful. I read the comments that have been made on my blog.
THANK YOU!
I know that I have been given a challenge, but I am determined to turn my challenge into an uplifting experience. I always said "If I could just help one person my goal is complete".
People care! They look in your eyes and say THANK YOU, but in return I say Thank You to them!
I feel a deep honesty inside me of who I am. That I will not deny.
I just felt so beautiful from the inside out today. It overwhelmed me.
Pain is just a part of life. EDS makes it harder. Why not take that negativity caused by pain and fill hope into peoples hearts.
I will leave out there names but these comments touched my heart.
Hey there, I know I am seriously being annoying about this cvr machine you have, but I am so interested in it for my own use and for my sister, I read your stories about how it is helping you and your family, and I am so interested. I just need to know where to find one. I am so impressed with you and the courage it is taking to get through this. I have always admired you, and this is just another reason to do so. Please get back to me with any info you can regarding this miracle machine!!!!
So I just went through all your posts! I am SO SORRY! I had no clue you were going through all of this!
Your attitude and outlook is incredible! and I'm sure that's a battle... but you are so inspiring. You are such a 'real' person, and I admire that so much! It makes me feel silly for the things I complain about, I guess you never know what other people are dealing with.
I would love more information on both the skin treatment and the CVR machine. I'm so glad you are finding the tools and people to help you on your journey.
If you ever need to talk or vent, please don't hesitate. As a person who has not lead a conventional life... I might relate to much of the depression, if not... I know I can listen. Good luck! and know that you are loved!
Alyssa,
First I would like to say how privileged I am to be your friend (again). We finally found each other and I hope we stay close forever! I miss seeing you everyday and wish I could just take you in my arms and give you a huge hug. Hopefully soon I can!
I would really like to come down and see you guys. I want to meet your wonderful kids that I hear and read so much about. I want to hug and kiss your mom and dad. I miss them so much, they were like my extended family.
Anyway, I love getting your blogs and you definitely encourage me to be a better person, not only for my son but for my family and friends too. I wish I had the guts to write a blog and email it to everyone I know. I am so proud of you and hope you are proud of yourself too. you have come a long way and deserve to be happy.
I love you and miss you a lot.
Thank you for loving me. I love you too!
Wednesday, March 17, 2010
Regaining strength
Attitude is Everything... BE HAPPY
So you would think that a cut on your leg wouldn't take much energy out of a person, but it really does! It is like every ounce of energy you have in you goes to repair that cut and the dislocation you had in the process. I am so glad today was almost 60 degrees! It was amazing. I put my gym clothes on and thought I would have the energy to go. It just isn't there yet. Maybe I will go tonight....Exercise helps SO much. Heat helps SO much. I can do this! I know I can. I am having a hard time getting satisfying breath today. It is like I have to breath in extra deep every few breaths to feel like I am getting satisfied oxygen.
So you would think that a cut on your leg wouldn't take much energy out of a person, but it really does! It is like every ounce of energy you have in you goes to repair that cut and the dislocation you had in the process. I am so glad today was almost 60 degrees! It was amazing. I put my gym clothes on and thought I would have the energy to go. It just isn't there yet. Maybe I will go tonight....Exercise helps SO much. Heat helps SO much. I can do this! I know I can. I am having a hard time getting satisfying breath today. It is like I have to breath in extra deep every few breaths to feel like I am getting satisfied oxygen.
Sunday, March 14, 2010
Negativity will get you nowhere
Attitude is Everything... BE HAPPY
So The weather is very up and down and up and down. Along with that comes pain, dislocations, poor healing, est...
Maybe I have been negative and not even realized it. It can't be expected of a person to be happy all the time. I am certainly not saying I am depressed. Not at all actually. I just wish I was in Hawaii in 100 degree weather. I have been in a very good place mentally. I have been finding that strength and will inside. I am human and I live in a chronic state of pain. Something I almost feel I am going numb to. It is always there, it will never go away. Hopefully with more practice I will be the one in control of the pain. Not the pain in control of me. It would be really nice to go one day without having to put something back in the proper place on this silly body. Just one day. I want to run with my kids. I want my hips to stay where they are supposed to so I can do that.
If you see me in boots all summer, it's because this darn cut won't heal on my leg. It is way to big to show the world it's beauty yet LOL!
So The weather is very up and down and up and down. Along with that comes pain, dislocations, poor healing, est...
Maybe I have been negative and not even realized it. It can't be expected of a person to be happy all the time. I am certainly not saying I am depressed. Not at all actually. I just wish I was in Hawaii in 100 degree weather. I have been in a very good place mentally. I have been finding that strength and will inside. I am human and I live in a chronic state of pain. Something I almost feel I am going numb to. It is always there, it will never go away. Hopefully with more practice I will be the one in control of the pain. Not the pain in control of me. It would be really nice to go one day without having to put something back in the proper place on this silly body. Just one day. I want to run with my kids. I want my hips to stay where they are supposed to so I can do that.
If you see me in boots all summer, it's because this darn cut won't heal on my leg. It is way to big to show the world it's beauty yet LOL!
Casting Judgment
Attitude is Everything... BE HAPPY
I try... I try so hard to be positive, to let the past be the past, and then out of nowhere someone has to bring it up and analyze you. I am me. I am a good person. I feel lost at times and I feel in control at times. It is only human to go through every emotion in the book.
I feel like I have lost my best friend. I just need friends. There has been so much change in the last year that I just need people to love me and stop bringing up all of the drama that goes with my past.
I have a good life. I have a husband who loves me and adores me. I have children who I hope to inspire.
I don't understand why some people need to analyze every little part of you. Why can't they just let it go and learn to love the you... the you that you are today and stop analyzing your past. That is a healing thing that I need personally. Just love me for me!
This past year has been very difficult. More challenging than I ever thought. But what I need the most is support.
Every day is not a walk in the garden. Some days those gardens are covered in thorns. If you had thorns in your garden I would still care about you! I WOULD NEVER CAST JUDGMENT ON SOMEONE FOR THE THORNS IN THEIR GARDEN. Or the thorns that they had already picked and thrown away.
I hope that people understand that there is a lot to gain by getting to know someone for who they are and not what they might have been in the past. Why open wounds that are trying to heal? Why?
If anything... there is beauty in every person that walks this earth. There is a beautiful quality even in the worst. We all have a spirit.
I said that I would always be honest here, and I will. Right now I feel like.... When will I have proven to the world that I really am trying. That I really am giving 100% to my life.
Tonight I feel sad, and I am aloud that feeling.
I try... I try so hard to be positive, to let the past be the past, and then out of nowhere someone has to bring it up and analyze you. I am me. I am a good person. I feel lost at times and I feel in control at times. It is only human to go through every emotion in the book.
I feel like I have lost my best friend. I just need friends. There has been so much change in the last year that I just need people to love me and stop bringing up all of the drama that goes with my past.
I have a good life. I have a husband who loves me and adores me. I have children who I hope to inspire.
I don't understand why some people need to analyze every little part of you. Why can't they just let it go and learn to love the you... the you that you are today and stop analyzing your past. That is a healing thing that I need personally. Just love me for me!
This past year has been very difficult. More challenging than I ever thought. But what I need the most is support.
Every day is not a walk in the garden. Some days those gardens are covered in thorns. If you had thorns in your garden I would still care about you! I WOULD NEVER CAST JUDGMENT ON SOMEONE FOR THE THORNS IN THEIR GARDEN. Or the thorns that they had already picked and thrown away.
I hope that people understand that there is a lot to gain by getting to know someone for who they are and not what they might have been in the past. Why open wounds that are trying to heal? Why?
If anything... there is beauty in every person that walks this earth. There is a beautiful quality even in the worst. We all have a spirit.
I said that I would always be honest here, and I will. Right now I feel like.... When will I have proven to the world that I really am trying. That I really am giving 100% to my life.
Tonight I feel sad, and I am aloud that feeling.
Thursday, March 11, 2010
Body Image
Attitude is Everything... BE HAPPY
Attitude is Everything... BE HAPPY
These were the words I always remember, " If you didn't have that scar on your face you would be to beautiful for you own good. You would get into way to much trouble".
So I am just going to say a few things about how I feel about the subject of body image. I was watching Jocie at dance last night thinking how beautiful and what a lady she is becoming. She shows so much confidence. Her legs are longer than mine and she is twelve.
So I started looking at myself from the age of three as different. A BIG scar on my face and drooping eye and mouth. I look back at pictures and can't even believe the progress my face has made. I should not look the way that I do. But WHY CAN"T I TOTALLY SEE IT!!! And then I get the chicken pox. Darn those chicken pox. Believe it or not... I think this is funny. I had the biggest crush on a boy named Brian Waters. Second grade. He was so cute and then I gave him the chicken pox. well that ended really fast. He wasn't to happy with me.
Then I am always bruised or cut. I start to grow into myself as a lady and people look at me now not the scares. Then I have a terrible surgery to reconstruct my right shoulder. Big battle wound. So we will add that to the equation.
Now it is time for high school and the pressure is on. Big time. I am a fun, cute popular California "bob your head around cheerleader." Oh no....I have to stay super cute all the time to look cute in this tiny little uniform. ( I still have it in my closet and I put it on every so often to make sure it still fits lol)
There is a lot I leave out, I guess all I am saying is this. I never want my daughter to feel insecure about her body or self image. She is just to special. She has so much going for her. She is helping me!
So back to the point I was trying to get to. Jocie has been listening everyday to the self esteem series on the CVR. She is really saying grown up things about how we should feel about ourselves. They ( who is this "they" everyone always refers to. LOL!!!) say that you learn so much about life from your children. It is the absolute truth. She is amazing.
Wednesday, March 10, 2010
Get Back on the path
Attitude is Everything... BE HAPPY
What do you do when you slip and fall. ( well for me I usually dislocate something or get some awful wound) LOL!!! But you get back up. If you just lay there eventually you'll be walked all over.
So I feel like the weather will finally figure itself out here in Utah. The pressure is up and down and up and down. My gosh it hurts. Mother nature is fired! People think it's so weird I spend an hour in a sauna, high pressure tanning beds, and infrared treatments. NO WAY IT HELPS! Heat is like natures pain reliever. Cold is just the rude thing she does for months here. I said I would be honest in this blog always. I will.
So I have been faithful in not refilling my prescriptions. I have been in heavy meditation. It is just so frustrating feeling like an 80 year old women stuck in this body.
I am hopeful that through this process I might even just inspire 1 person. So they know they are not alone. It is hard. It hurts, but eventually it will all work out.
That little bug crawls in your brain everyday and says " drugs take the pain away" . You know what I have to say to that... kiss my butt ( I hope my mother doesn't read this, that would not be a very lady like thing for me to say) but dang it! That is how I feel. Since everyone in my family is now addicted to the CVR I have sort of forgotten about myself. It is not that I am angry, I just always want to remain positive and never become bitter. So Since it is 3:55 am I think I will get on that magic machine and get back on the path.
What do you do when you slip and fall. ( well for me I usually dislocate something or get some awful wound) LOL!!! But you get back up. If you just lay there eventually you'll be walked all over.
So I feel like the weather will finally figure itself out here in Utah. The pressure is up and down and up and down. My gosh it hurts. Mother nature is fired! People think it's so weird I spend an hour in a sauna, high pressure tanning beds, and infrared treatments. NO WAY IT HELPS! Heat is like natures pain reliever. Cold is just the rude thing she does for months here. I said I would be honest in this blog always. I will.
So I have been faithful in not refilling my prescriptions. I have been in heavy meditation. It is just so frustrating feeling like an 80 year old women stuck in this body.
I am hopeful that through this process I might even just inspire 1 person. So they know they are not alone. It is hard. It hurts, but eventually it will all work out.
That little bug crawls in your brain everyday and says " drugs take the pain away" . You know what I have to say to that... kiss my butt ( I hope my mother doesn't read this, that would not be a very lady like thing for me to say) but dang it! That is how I feel. Since everyone in my family is now addicted to the CVR I have sort of forgotten about myself. It is not that I am angry, I just always want to remain positive and never become bitter. So Since it is 3:55 am I think I will get on that magic machine and get back on the path.
Monday, March 8, 2010
A few thoughts on today
Attitude is Everything... BE HAPPY
You know it really is important that I cover a few things today for my own personal growth. First of all I have been sent to one Doctor after another. It seems like every time I walk in that building and they know what I have a goofy little smile comes to their face. I had a very good Doctor call me today and give me very positive feedback mixed with some eye opening comments.
DR. "Alyssa... no wonder you have felt the way you have felt for so long, you are very rare and have been hearing their is nothing that can be done except surgeries and drugs for so long. I want you to know that I am impressed with your attitude and outlook on your disease."
Alyssa " I try to remain positive, but sometimes I defiantly have my days.I have had a few in a row.
DR. " I want you to see the best geneticists in Utah. Because you are so rare he is the best we have in the state and he might know who to send you and Mason to. I want you to know that I care!
Thought #1 Well I cut a HUGE gash in my leg. I have terrible balance and fall very easily. Then I sliced my finger open with a knife in the soapy water of the sink. I forgot it was there. So to get to the point, I dislocated my hip in the process and all of the muscles from my waist down are spasmed so badly. Also it will probably leave a huge scar, and take forever to heal. Bummer but that is the card I was dealt for the day I guess. So I feel bad that I actually was so mean to everyone that was around me today because of my discomfort. How rude of me to speak to my children meanly and talk to my husband in disrespect. I apologized and know that tomorrow is another day and I can do better.Once it scabs up I am trying that skincerity on it. It certainly is working on the scares I already have, so why not.
Thought #2 Learning to love yourself for who you are. Not what people think you should be,act or look like. I had a really hard time when I came out of detox and gained 10 pounds, then gained 5 more. Everyone said " Alyssa you look so much better and so much happier". Well I am a faithful gym girl, but hit a few snags because of joints and this cut. Why am I so hard on myself? Why can't I just take off the glasses that I see myself in and see me how others see me?
Jocie has been listening to the self esteem series on the CVR. She showed a lot of confidence today. Jocie is a fireball, but she was saying some very grown up things about body image to her 31 year old mother. She blew my mind. Confidence is pouring out of her.
Thought #3 It is hard to watch your child struggle. It is a blessing when he asks for something as simple as "that machine" because he was stressed out."Mom, I really need to go get on the machine(CVR) so I can just let all this go.
What a simple tool has become such a power tool and blessing.
Like I always say...It is OK to have a bad day. What will I do tomorrow... HAVE A BETTER ONE!
I love the words of this song...
You can travel the world
But you can't run away
From the person you are in your heart
You can be who you want to be
Make us believe in you
Keep all your light in the dark
If you're searchin for truth
You must look in the mirror
And make sense of what you can see
Just be
Just be
They say learning to love yourself
Is the first step
That you take when you want to be real
Flying on planes to exotic locations
Won't teach you
How you really feel
Face up to the fact
That you are who you are
Nothing can change that belief
Just be
Just be
'cause now I know
It's not so far
To where I go
The hardest part
Is inside me
I need
To just be
Just be
Just be
Just be
Just be
I was lost
And I'm still lost
But I feel so much better
'cause now I know
It's not so far
To were I go
The hardest part
Is inside me
I need
To just be
Just be
So tomorrow... I will let today go and just be. Be the best ME I can be. Sometimes we can take life and plan it out week by week, and sometimes we need to just be still and take it minute by minute. I know that I can do this. I have the tools. I just need to take a deep breath and remember that tomorrow I can do better.
You know it really is important that I cover a few things today for my own personal growth. First of all I have been sent to one Doctor after another. It seems like every time I walk in that building and they know what I have a goofy little smile comes to their face. I had a very good Doctor call me today and give me very positive feedback mixed with some eye opening comments.
DR. "Alyssa... no wonder you have felt the way you have felt for so long, you are very rare and have been hearing their is nothing that can be done except surgeries and drugs for so long. I want you to know that I am impressed with your attitude and outlook on your disease."
Alyssa " I try to remain positive, but sometimes I defiantly have my days.I have had a few in a row.
DR. " I want you to see the best geneticists in Utah. Because you are so rare he is the best we have in the state and he might know who to send you and Mason to. I want you to know that I care!
Thought #1 Well I cut a HUGE gash in my leg. I have terrible balance and fall very easily. Then I sliced my finger open with a knife in the soapy water of the sink. I forgot it was there. So to get to the point, I dislocated my hip in the process and all of the muscles from my waist down are spasmed so badly. Also it will probably leave a huge scar, and take forever to heal. Bummer but that is the card I was dealt for the day I guess. So I feel bad that I actually was so mean to everyone that was around me today because of my discomfort. How rude of me to speak to my children meanly and talk to my husband in disrespect. I apologized and know that tomorrow is another day and I can do better.Once it scabs up I am trying that skincerity on it. It certainly is working on the scares I already have, so why not.
Thought #2 Learning to love yourself for who you are. Not what people think you should be,act or look like. I had a really hard time when I came out of detox and gained 10 pounds, then gained 5 more. Everyone said " Alyssa you look so much better and so much happier". Well I am a faithful gym girl, but hit a few snags because of joints and this cut. Why am I so hard on myself? Why can't I just take off the glasses that I see myself in and see me how others see me?
Jocie has been listening to the self esteem series on the CVR. She showed a lot of confidence today. Jocie is a fireball, but she was saying some very grown up things about body image to her 31 year old mother. She blew my mind. Confidence is pouring out of her.
Thought #3 It is hard to watch your child struggle. It is a blessing when he asks for something as simple as "that machine" because he was stressed out."Mom, I really need to go get on the machine(CVR) so I can just let all this go.
What a simple tool has become such a power tool and blessing.
Like I always say...It is OK to have a bad day. What will I do tomorrow... HAVE A BETTER ONE!
I love the words of this song...
You can travel the world
But you can't run away
From the person you are in your heart
You can be who you want to be
Make us believe in you
Keep all your light in the dark
If you're searchin for truth
You must look in the mirror
And make sense of what you can see
Just be
Just be
They say learning to love yourself
Is the first step
That you take when you want to be real
Flying on planes to exotic locations
Won't teach you
How you really feel
Face up to the fact
That you are who you are
Nothing can change that belief
Just be
Just be
'cause now I know
It's not so far
To where I go
The hardest part
Is inside me
I need
To just be
Just be
Just be
Just be
Just be
I was lost
And I'm still lost
But I feel so much better
'cause now I know
It's not so far
To were I go
The hardest part
Is inside me
I need
To just be
Just be
So tomorrow... I will let today go and just be. Be the best ME I can be. Sometimes we can take life and plan it out week by week, and sometimes we need to just be still and take it minute by minute. I know that I can do this. I have the tools. I just need to take a deep breath and remember that tomorrow I can do better.
Friday, March 5, 2010
Sleep
Attitude is Everything... BE HAPPY
Since I use the CVR everyday I have noticed several things. Things that might seem normal to someone else are HUGE to me. Imagine for years and years not sleeping for more than an hour at a time, and going for days and days without any sleep at all. My children beg me to put them on the CVR before bed. In fact they ask several times per day. Mason is sleeping completely through the night! I haven't heard any cries or "mom I need help" for several nights.
I slept from 9:30 pm-9:30 am last night. I woke one time in the night, but rehearsed the words that were spoken in the session I had listened to before going to bed. IT WORKED!!! I fell back asleep and awoke refreshed.
When you deal with chronic pain, you also get insomnia, anxiety, and depression. As I am going through this process I feel like I am getting back my life. A life I have never experienced fully before. I haven't felt like this EVER! On the outside most people would never know that I was crumbling inside. I don't feel that way. I can never go without this system. It is now the power tool for my home.
Since I use the CVR everyday I have noticed several things. Things that might seem normal to someone else are HUGE to me. Imagine for years and years not sleeping for more than an hour at a time, and going for days and days without any sleep at all. My children beg me to put them on the CVR before bed. In fact they ask several times per day. Mason is sleeping completely through the night! I haven't heard any cries or "mom I need help" for several nights.
I slept from 9:30 pm-9:30 am last night. I woke one time in the night, but rehearsed the words that were spoken in the session I had listened to before going to bed. IT WORKED!!! I fell back asleep and awoke refreshed.
When you deal with chronic pain, you also get insomnia, anxiety, and depression. As I am going through this process I feel like I am getting back my life. A life I have never experienced fully before. I haven't felt like this EVER! On the outside most people would never know that I was crumbling inside. I don't feel that way. I can never go without this system. It is now the power tool for my home.
Thursday, March 4, 2010
Detox Skin
Attitude is Everything... BE HAPPY
After I came home from detox, the process was defiantly not over. Our largest organ, our skin, really takes a toll. Especially during this time. All of the terrible toxins that have build up for years need to start to come out. More than likely you will see changes in your skin.Rashes, acne,discoloration,and more. I found a revolutionary product. I had three people ask me today about my skin. My husband even turned to me at dinner and told me that I look vibrant, even toned, and radiant. The product I am referring to is called SKINCERITY. I have been using it at night as directed and within days people are asking for it. It is the world's only nightly breathable masque. It is wonderful. It isn't greasy, messy, oily, thick, or anything else we associate with a skin treatment. It is clear. It dries within seconds.It is in a convenient roll on application. No one knows you have it on. You don't even feel you have it on. Since I am now taking care of my mind,body and spirit.. beauty is coming along with it. If you want information on this product please email me.
After I came home from detox, the process was defiantly not over. Our largest organ, our skin, really takes a toll. Especially during this time. All of the terrible toxins that have build up for years need to start to come out. More than likely you will see changes in your skin.Rashes, acne,discoloration,and more. I found a revolutionary product. I had three people ask me today about my skin. My husband even turned to me at dinner and told me that I look vibrant, even toned, and radiant. The product I am referring to is called SKINCERITY. I have been using it at night as directed and within days people are asking for it. It is the world's only nightly breathable masque. It is wonderful. It isn't greasy, messy, oily, thick, or anything else we associate with a skin treatment. It is clear. It dries within seconds.It is in a convenient roll on application. No one knows you have it on. You don't even feel you have it on. Since I am now taking care of my mind,body and spirit.. beauty is coming along with it. If you want information on this product please email me.
More progress everyday
Attitude is Everything... BE HAPPY
Everyday I use the CVR. EVERYDAY!!! It has become my power tool to stay on the road to success. It is hard to explain exactly how you feel. People have been telling me that I seem happier. I am out more. Each time I feel down I use the CVR. The meditative coaching is amazing. I really feel like my brain is being retrained. Both of my kids asked me to let them use it before bed last night. They slept so soundly and fell asleep so quickly. There is no pill, patch, cream or crazy set up. It is simple, calming, and perfect.
After mason got home from school today he was very upset. I understand... It's cold. With EDS it really hurts. He went and laid down and asked to use the CVR. When his session was done. He came out of the room smiling and apologized for having a negative attitude.
I am not saying that the CVR is only for pain. I personally am using it for several things. There are so many programs in this system that it is for everyone. I get so excited to use it everyday.
Now this is a BIGGY for me! I have not refilled my prescriptions.I have actually slept for 7 straight hours. That NEVER happened before. They even had to give me shots to put me down because I could not sleep before. Each day gets better and better.
Remember it is OK to have a bad day. It's aloud. At least now I have a tool. I have read for so long about unlocking the power of your brain. It is so true.
Everyday I use the CVR. EVERYDAY!!! It has become my power tool to stay on the road to success. It is hard to explain exactly how you feel. People have been telling me that I seem happier. I am out more. Each time I feel down I use the CVR. The meditative coaching is amazing. I really feel like my brain is being retrained. Both of my kids asked me to let them use it before bed last night. They slept so soundly and fell asleep so quickly. There is no pill, patch, cream or crazy set up. It is simple, calming, and perfect.
After mason got home from school today he was very upset. I understand... It's cold. With EDS it really hurts. He went and laid down and asked to use the CVR. When his session was done. He came out of the room smiling and apologized for having a negative attitude.
I am not saying that the CVR is only for pain. I personally am using it for several things. There are so many programs in this system that it is for everyone. I get so excited to use it everyday.
Now this is a BIGGY for me! I have not refilled my prescriptions.I have actually slept for 7 straight hours. That NEVER happened before. They even had to give me shots to put me down because I could not sleep before. Each day gets better and better.
Remember it is OK to have a bad day. It's aloud. At least now I have a tool. I have read for so long about unlocking the power of your brain. It is so true.
Wednesday, March 3, 2010
Mason on CVR
Attitude is Everything... BE HAPPY
Since I have had the CVR machine in my house I have been so surprised by the reaction of my family. When Mason got home from school today he asked me to put him on the CVR right away. He said he felt happy all day. Jocie has also been enjoying her experience. She is very high strung and has a lot of anxiety. She asked me to put her on the stress reduction program tonight and she soundly drifted off to sleep. As for Mason... parents with children with EDS know that there are sleep issues. Constant " I hurt. I am uncomfortable. I can't sleep" For the first time that I can ever remember Mason slept 11 hours straight. He asked me to let him use the pain free session again tonight. He quickly drifted off to sleep. Even my mother came over today and asked if she could try the system. After listening to the demo, she wanted to start the insomnia series. She has a very hard time falling and staying asleep. After I asked her about her experience she did this...
She walked out the front door with a smile on her face and said she felt so relaxed. She couldn't believe that even though the comforting, soft lights in the eyeglasses were blue, she could visualize all of the colors and different visualizations that she had been meditatively been coached through. I have been into meditation for years. Nothing compares to the CVR!!! NOTHING! I personally am having a phenomenal experience. Through the calm soothing coaching, music, soothing sounds and comforting lights, I am retraining my brain to control pain. At this point I certainly haven't eliminated pain, but I am learning how to unlock the inner pharmacy of my mind.
I also have not turned on my oxygen machine for 3 nights. I am using the breathing techniques and going over and over the information in my mind.
I slept for a solid 7 hours without waking up.
I know that detox and pain management are difficult, but if we choose to change our focus a new reality comes to you.
I have not refilled my prescription for joint pain and muscle spasm. That blows my mind.
I will continue this process and gain control of my life again.
It is OK to have bad days. We all have them. We can also train our minds to overcome and develop things inside ourselves we never knew we had.
If I had the CVR during the hospital detox I know I would have had a completely different experience. I would have been able to focus. Watching TV and vegetating just gives you more time to think about the pain and discomfort you are in. There is nothing else like this! I know I have tried them all.
Tuesday, March 2, 2010
CVR
Attitude is Everything... BE HAPPY
Today I was able to bring home a personal Creative Visualization & Relaxation unit (CVR). I wanted to test it out on my son who also has EDS. He was a little nervous, but I explained to him that it isn't scarey and that he would feel good. I put him through the demonstration, and then to the pain free session. I watched as I saw a 9 year old boy's breathing change and he was even moving his mouth to the calming words that were being said to him. After the session was over, I gave him a few minutes to talk to me about how he felt. These were his exact words
"mom I imagined everything was white and I feel like I just got back from heaven.Mom I feel like I am in a different world. Do not take this away. I feel happy."
Monday, March 1, 2010
Amazing Experiance
Attitude is Everything3/1/10
Amazing Experience
I know that God puts people in our path at the right time for the right reasons. I had an amazing experience today that for the first time in so many years, I have hope. I have lived with chronic pain for all of my life that I just figured that that was how it would be. I randomly went to a salon and met a man that said that he had a system that could help. I try to remain positive and outgoing. So I thought that I would give it a try. As most of you know, I have been in serious opiate withdrawal for about a month. It has been very challenging, but I continue to read, educate myself, and keep a positive frame of mind. I really feel like I have learned that from my father. To see all of his struggles, he gives me strength.
So I go into the salon and they wrap me in infrared blankets and put earphones and dark glasses on me. The room is calm and soothing. I close my eyes and see small blinking lights in the corners of my eyes. I hear the most beautiful voice and music with inspiring words. I realized that I was crying. I followed all of the directions and felt the most peaceful feeling I have ever felt. I read a lot, and try to always enlighten my spirit with good things. At times I slip but I try to get right back up. This was an experience that I feel hard to explain. All I can say is this.... I felt hope. Our brains are so powerful that we can train them to be our strongest healer. If you have questions about this please email me. As I sit and think about this experience today I tear up. It was beautiful and inspiring.
Posted by Alyssa at 4:31 PM
... BE HAPPY
Amazing Experience
I know that God puts people in our path at the right time for the right reasons. I had an amazing experience today that for the first time in so many years, I have hope. I have lived with chronic pain for all of my life that I just figured that that was how it would be. I randomly went to a salon and met a man that said that he had a system that could help. I try to remain positive and outgoing. So I thought that I would give it a try. As most of you know, I have been in serious opiate withdrawal for about a month. It has been very challenging, but I continue to read, educate myself, and keep a positive frame of mind. I really feel like I have learned that from my father. To see all of his struggles, he gives me strength.
So I go into the salon and they wrap me in infrared blankets and put earphones and dark glasses on me. The room is calm and soothing. I close my eyes and see small blinking lights in the corners of my eyes. I hear the most beautiful voice and music with inspiring words. I realized that I was crying. I followed all of the directions and felt the most peaceful feeling I have ever felt. I read a lot, and try to always enlighten my spirit with good things. At times I slip but I try to get right back up. This was an experience that I feel hard to explain. All I can say is this.... I felt hope. Our brains are so powerful that we can train them to be our strongest healer. If you have questions about this please email me. As I sit and think about this experience today I tear up. It was beautiful and inspiring.
Posted by Alyssa at 4:31 PM
... BE HAPPY
Friday, February 26, 2010
This is very hard
It is very hard and very painful to be off of medications that took the pain away. They also took my life away! Today my stomach is so upset I have been sick twice. My jaw hurts. My shoulders hurt. My knees hurt. My hands hurt!!!!! My back hurts. All in all, it all hurts. I am very tired. I want to be productive and exciting but it is so hard today. I prepared the house for Joice's 12Th birthday party. They are all so cute. I keep going up to take pictures, but come back down because I don't want them to see that Joice's mom is in pain. As I was reading this morning, I read about anger. It is OK for me to be angry every once in a while. I try so hard to be positive and not bitter, but this is very painful and difficult. I feel so tired and feel like I could sleep for days, but am awakened every hour because of something. I also read about guilt today. It is OK for me to have rough days. I strive to have a better day tomorrow. If I can meditate myself out of this it might help. Keeping a positive mindset is so important!
Thursday, February 25, 2010
Detox
Attitude is Everything... BE HAPPY
I took a big and challenging step. After years of being on very serious pain medications, I decided that I was loosing my life. I wanted to live again. I wanted to be a better mother, wife, friend, daughter, sister. I needed to take an aggressive step in empowering myself against this. I voluntarily put myself into a medical detox center. It was extremely hard! Coming off of those drugs was so painful and depressing. I had a very long list of serios pain medications to withdrawl from. I have been taking action! I go to the gym every morning at 5:30-7:30 am. I sit in the sauna. I drink clean water and eat clean mostly raw foods. I am reading motivational books and trying to keep myself busy. For the first few weeks I felt like I had the worst flu of my life. In my research withdrawl could last up to a year. I fight it everyday, but I refuse to give up. I where my stabilizing braces. People look all the time, but I don't care. I have a very hard time sleeping and the pain in constant. I don't even remember what it feels like to not have pain. My balance sometimes makes me look silly, but just laugh and move on :-) I am very tired and need to rest a lot. I have constant headaches. Withdrawl is not fun, but even though there is a serious degree of pain involved, I will be able to regain my life!
Meditate
Find peace
It's ok if you get angry
know that your story might help someone
When you hurt, change your thought to something happy
ATTITUDE IS EVERYTHING... BE HAPPY
I took a big and challenging step. After years of being on very serious pain medications, I decided that I was loosing my life. I wanted to live again. I wanted to be a better mother, wife, friend, daughter, sister. I needed to take an aggressive step in empowering myself against this. I voluntarily put myself into a medical detox center. It was extremely hard! Coming off of those drugs was so painful and depressing. I had a very long list of serios pain medications to withdrawl from. I have been taking action! I go to the gym every morning at 5:30-7:30 am. I sit in the sauna. I drink clean water and eat clean mostly raw foods. I am reading motivational books and trying to keep myself busy. For the first few weeks I felt like I had the worst flu of my life. In my research withdrawl could last up to a year. I fight it everyday, but I refuse to give up. I where my stabilizing braces. People look all the time, but I don't care. I have a very hard time sleeping and the pain in constant. I don't even remember what it feels like to not have pain. My balance sometimes makes me look silly, but just laugh and move on :-) I am very tired and need to rest a lot. I have constant headaches. Withdrawl is not fun, but even though there is a serious degree of pain involved, I will be able to regain my life!
Meditate
Find peace
It's ok if you get angry
know that your story might help someone
When you hurt, change your thought to something happy
ATTITUDE IS EVERYTHING... BE HAPPY
Update for those who have been wondering where I went.
So this will be my complete honesty blog. I will tell exactly how I feel and I won't candy coat anything.
So for those of you who know me, and wondered where I went for a while this is why.... Since I was a child I had many struggles with pain, bruising, dislocations, and many other things I did;t understand. The doctors tell you that you are depressed or bipolar, or just looking for attention.
When I was 14 I had my first major reconstruction of my right shoulder. A few days after I had the surgery,( it was much more involved than they thought it would be), I wanted to take a shower. So my mom bathed me, and my shoulder slipped and everything that was repaired tore. So later I had another reconstruction of the same shoulder. The DR. said it was bizarre and that I was very hyper mobile . For so long I had deep bruising that couldn't be explained, and headaches that would make you feel sick. They were always behind my right eye. My hips, shoulders, jaw,hands, feet, and the middle of my back were in so much pain all the time. The dislocations became a circus trick for the other kids, but it was degenerating my joints rapidly. By 10Th grade I was so excited to be on the cheer leading squad. I tried to ignore the pain, but it became to much. I left school in such a depression and had a tutor at the house to give me my homework. I didn't know how to explain things to people. I felt like such a burden and felt like I was always in a chiropractors office or DR. office. Living in chronic pain does cause depression. So for years they tried medication to treat the depression, but couldn't figure out about the pain.
When I was in my early 20's my pain started to take hold even more. I didn't want to complain but I couldn't explain it and neither could the doctors. My balance became unstable, and the dislocations were more frequent and painful. Since my father has MS I saw his neurologist. He did several tests, but there were no lessons on my brain. He did tests on my joints and flexibility. I even had some crazy test where they put small needles in your nerves to see the reaction. I was called back in for the diagnosis. Ehler Danlos syndrome hyper mobility type 3. At least there was an answer. I was counseled to see a genetic specialist about having children. I had already had two. This gean could be passed to my children. Unfortunately it was to late for that. I had passed the gean to our son Mason. I was counseled to not have anymore children because of the complications of carrying and delivering babies. I have two beautiful children and a very supportive husband. So I am blessed. My next post will help you to understand what has been going on for the past few years and how I am finding empowerment through this and the mission of increasing my knowledge and awareness so that I can help our son.
So for those of you who know me, and wondered where I went for a while this is why.... Since I was a child I had many struggles with pain, bruising, dislocations, and many other things I did;t understand. The doctors tell you that you are depressed or bipolar, or just looking for attention.
When I was 14 I had my first major reconstruction of my right shoulder. A few days after I had the surgery,( it was much more involved than they thought it would be), I wanted to take a shower. So my mom bathed me, and my shoulder slipped and everything that was repaired tore. So later I had another reconstruction of the same shoulder. The DR. said it was bizarre and that I was very hyper mobile . For so long I had deep bruising that couldn't be explained, and headaches that would make you feel sick. They were always behind my right eye. My hips, shoulders, jaw,hands, feet, and the middle of my back were in so much pain all the time. The dislocations became a circus trick for the other kids, but it was degenerating my joints rapidly. By 10Th grade I was so excited to be on the cheer leading squad. I tried to ignore the pain, but it became to much. I left school in such a depression and had a tutor at the house to give me my homework. I didn't know how to explain things to people. I felt like such a burden and felt like I was always in a chiropractors office or DR. office. Living in chronic pain does cause depression. So for years they tried medication to treat the depression, but couldn't figure out about the pain.
When I was in my early 20's my pain started to take hold even more. I didn't want to complain but I couldn't explain it and neither could the doctors. My balance became unstable, and the dislocations were more frequent and painful. Since my father has MS I saw his neurologist. He did several tests, but there were no lessons on my brain. He did tests on my joints and flexibility. I even had some crazy test where they put small needles in your nerves to see the reaction. I was called back in for the diagnosis. Ehler Danlos syndrome hyper mobility type 3. At least there was an answer. I was counseled to see a genetic specialist about having children. I had already had two. This gean could be passed to my children. Unfortunately it was to late for that. I had passed the gean to our son Mason. I was counseled to not have anymore children because of the complications of carrying and delivering babies. I have two beautiful children and a very supportive husband. So I am blessed. My next post will help you to understand what has been going on for the past few years and how I am finding empowerment through this and the mission of increasing my knowledge and awareness so that I can help our son.
Ehler Danlos Syndrome
Ehlers-Danlos syndrome
From Wikipedia, the free encyclopedia
Ehlers-Danlos Syndrome
Classification and external resources
Ehlers-Danlos syndrome (EDS) (also known as "Cutis hyperelastica"[1]) is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure and treatment is supportive, including close monitoring of cardiovascular system.
The syndrome is named after two doctors, Edvard Ehlers of Denmark, and Henri-Alexandre Danlos of France, who identified it at the turn of the 20th century.[2]
Individual with EDS displaying hypermobile joints.
Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of Type III collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:
Highly flexible fingers and toes
Loose, unstable joints that are prone to: sprains, dislocations, subluxations (partial dislocations), hyperextension (double jointedness) [3]
Flat feet
High and narrow palate, a sign, resulting in dental crowding
Easy bruising
Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
Velvety-smooth skin which may be stretchy
Abnormal wound healing and scar formation
Low muscle tone and Muscle weakness
Early onset of osteoarthritis
Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse) [4]
Other, less common signs and complications may include:
Osteopenia (low bone density)
Talipes equinovarus (club foot), especially in the Vascular type
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility [5], Arnold-Chiari malformation [6]
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy) [7]
Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
Fibromyalgia symptoms: Myalgia and arthralgia [8]
otosclerosis (hearing loss) [9]
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly) [10]
Infants with hypermobile joints often appear to have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture
Because it is often goes undiagnosed in childhood, some instances of Ehlers-Danlos syndrome have been mischaracterized as child abuse.[11] The pain, a symptom, associated with this condition is a serious complication.
Classification
In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names.[12] These six major types are listed here. Other types of the condition may exist, but they have been reported only in single families or are not well characterized. Except for hypermobility, the specific mutations involved have been identified and they can be precisely identified by genetic testing; this is valuable due to a great deal of variation in individual presentation of symptoms which may confuse classification of individuals on purely symptomatic basis. In order of prevalence in the population, they are:
Name Number Description OMIM Gene(s)
Hypermobility type 3 Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Mutations in either of two separate genes (which are also involved in Vascular EDS and Tenascin-X deficiency EDS, respectively) may lead to this variant. Extreme flexibility is the hallmark of this type. 130020 COL3A1, TNXB
Classical types 1 & 2 Affects approximately 2 to 5 in 100,000 people. It is caused by autosomal dominant mechanism and affects type-V collagen, as well as type I. Type 1 typically presents with severe skin involvement, and type 2 presents with mild to moderate skin involvement. 130000, 130010 COL5A1, COL5A2, COL1A1
Vascular type 4 Is an autosomal dominant defect in the type-III collagen synthesis; affecting approximately 1 in 100,000 to 250,000 people. The vascular type is considered one of the more serious forms of Ehlers-Danlos syndrome because blood vessels and organs are more prone to tearing (rupture). Patients with EDS type 4 often express a characteristic facial appearance (large eyes, small chin, thin nose and lips, lobeless ears), have a small stature with a slim build, and typically have thin, pale, translucent skin (veins can usually be seen on the chest and abdomen). About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40. 130050 COL3A1
Kyphoscoliosis type 6 Is an autosomal dominant defect due to deficiency of an enzyme called lysyl hydroxylase; it is very rare, with fewer than 60 cases reported. The kyphoscoliosis type is characterised by progressive curvature of the spine (scoliosis), fragile eyes, and severe muscle weakness. 225400, 229200 PLOD1
Arthrochalasis types 7A & B Is also very rare, with about 30 cases reported. It affects type-I collagen. The arthrochalasia type is characterised by very loose joints and dislocations involving both hips. 130060 COL1A1, COL1A2
Dermatosparaxis type 7C Also very rare, with about 10 cases reported. The dermatosparaxis type is characterised by extremely fragile and sagging skin. 225410 ADAMTS2
Other types
Although the above classifications are well defined, it is rare for a case to fit neatly in a single category, and cross-over symptoms lead to under-diagnosis or mis-diagnosis. So patients should not rely on the "fact" of having a certain type of EDS if cross-over symptoms are evident and might be life-threatening.
"The large number of distinct types of the Ehlers-Danlos syndrome that have already been identified indicates great heterogeneity, but clearly that heterogeneity is not exhausted by the present classification." [8] Forms of EDS within this category may present with soft, mildly stretchable skin, shortened bones, chronic diarrhea, joint hypermobility and dislocation, bladder rupture, or poor wound healing. Inheritance patterns within this group include X-linked recessive, autosomal dominant, and autosomal recessive. Examples of types of related syndromes other than those above reported in the medical literature include
From Wikipedia, the free encyclopedia
Ehlers-Danlos Syndrome
Classification and external resources
Ehlers-Danlos syndrome (EDS) (also known as "Cutis hyperelastica"[1]) is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure and treatment is supportive, including close monitoring of cardiovascular system.
The syndrome is named after two doctors, Edvard Ehlers of Denmark, and Henri-Alexandre Danlos of France, who identified it at the turn of the 20th century.[2]
Individual with EDS displaying hypermobile joints.
Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of Type III collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:
Highly flexible fingers and toes
Loose, unstable joints that are prone to: sprains, dislocations, subluxations (partial dislocations), hyperextension (double jointedness) [3]
Flat feet
High and narrow palate, a sign, resulting in dental crowding
Easy bruising
Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
Velvety-smooth skin which may be stretchy
Abnormal wound healing and scar formation
Low muscle tone and Muscle weakness
Early onset of osteoarthritis
Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse) [4]
Other, less common signs and complications may include:
Osteopenia (low bone density)
Talipes equinovarus (club foot), especially in the Vascular type
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility [5], Arnold-Chiari malformation [6]
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy) [7]
Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
Fibromyalgia symptoms: Myalgia and arthralgia [8]
otosclerosis (hearing loss) [9]
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly) [10]
Infants with hypermobile joints often appear to have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture
Because it is often goes undiagnosed in childhood, some instances of Ehlers-Danlos syndrome have been mischaracterized as child abuse.[11] The pain, a symptom, associated with this condition is a serious complication.
Classification
In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names.[12] These six major types are listed here. Other types of the condition may exist, but they have been reported only in single families or are not well characterized. Except for hypermobility, the specific mutations involved have been identified and they can be precisely identified by genetic testing; this is valuable due to a great deal of variation in individual presentation of symptoms which may confuse classification of individuals on purely symptomatic basis. In order of prevalence in the population, they are:
Name Number Description OMIM Gene(s)
Hypermobility type 3 Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Mutations in either of two separate genes (which are also involved in Vascular EDS and Tenascin-X deficiency EDS, respectively) may lead to this variant. Extreme flexibility is the hallmark of this type. 130020 COL3A1, TNXB
Classical types 1 & 2 Affects approximately 2 to 5 in 100,000 people. It is caused by autosomal dominant mechanism and affects type-V collagen, as well as type I. Type 1 typically presents with severe skin involvement, and type 2 presents with mild to moderate skin involvement. 130000, 130010 COL5A1, COL5A2, COL1A1
Vascular type 4 Is an autosomal dominant defect in the type-III collagen synthesis; affecting approximately 1 in 100,000 to 250,000 people. The vascular type is considered one of the more serious forms of Ehlers-Danlos syndrome because blood vessels and organs are more prone to tearing (rupture). Patients with EDS type 4 often express a characteristic facial appearance (large eyes, small chin, thin nose and lips, lobeless ears), have a small stature with a slim build, and typically have thin, pale, translucent skin (veins can usually be seen on the chest and abdomen). About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40. 130050 COL3A1
Kyphoscoliosis type 6 Is an autosomal dominant defect due to deficiency of an enzyme called lysyl hydroxylase; it is very rare, with fewer than 60 cases reported. The kyphoscoliosis type is characterised by progressive curvature of the spine (scoliosis), fragile eyes, and severe muscle weakness. 225400, 229200 PLOD1
Arthrochalasis types 7A & B Is also very rare, with about 30 cases reported. It affects type-I collagen. The arthrochalasia type is characterised by very loose joints and dislocations involving both hips. 130060 COL1A1, COL1A2
Dermatosparaxis type 7C Also very rare, with about 10 cases reported. The dermatosparaxis type is characterised by extremely fragile and sagging skin. 225410 ADAMTS2
Other types
Although the above classifications are well defined, it is rare for a case to fit neatly in a single category, and cross-over symptoms lead to under-diagnosis or mis-diagnosis. So patients should not rely on the "fact" of having a certain type of EDS if cross-over symptoms are evident and might be life-threatening.
"The large number of distinct types of the Ehlers-Danlos syndrome that have already been identified indicates great heterogeneity, but clearly that heterogeneity is not exhausted by the present classification." [8] Forms of EDS within this category may present with soft, mildly stretchable skin, shortened bones, chronic diarrhea, joint hypermobility and dislocation, bladder rupture, or poor wound healing. Inheritance patterns within this group include X-linked recessive, autosomal dominant, and autosomal recessive. Examples of types of related syndromes other than those above reported in the medical literature include
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