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
Wednesday, November 24, 2010
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
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