1)My sidewalk was not salted when I left for work. When I got home there was more salt on the sidewalk then needed for all of Village Green...
2)Doctors. When you have a more complex disability like mine, one where not many doctors have heard about it and one that is not that studied, it is hard to get a doctor to actually listen to you. It's hard to get a doctor to sit down, listen to you, run the right tests, and not give you a bunch of garbage. I have had good experiences with doctors. For example, when I was having my asthma attack and I went to Akron General with a good friend my doctor came in and went on and on about how he studied ED in Med School. Knew what to do and sent me on my way. Then I have my bad times like my last ER visit I told you guys about. And then I have times when I have the same re-occuring med. problem only to find out it could be something that no one considered because I am just looking for drugs. Now I find out I may need my gall bladder out when everyone kept telling me I was just a druggie. Wow, thanks, that stays in my medical records for YEARS.
I don't mind a doctor asking me questions. I don't mind anyone asking me questions about disability. As I say, stupidity is a disability and so is ignorance. Don't be afriad to ask ?'s and talk to me. I don't bite.
Wednesday, November 26, 2008
Saturday, November 22, 2008
Chronic Illness
Not all disabilities stem from a chronic illness. Some do such as Alex's and mine (which are two different diseases FYI). I wish I knew how to explain having a chronic illness has affected my life but I can't. It's not something you can easily explain. An unknown author has found a way to sum it up (which is posted in this entry at the end, please read) so I am going to share it with you.
But today I was talking about my disease. That I feel like I am losing my independence. After 8 hours of straight typing and walking so much my joints are shot. I can't go through a normal day with out wanting to cry. And I feel like I am losing the one thing I wanted to always have, my independence. And it is upsetting. I don't want to be dependent on someone. I don't want to have to depend on someone to take care of me or have to do anything for me. I want to in five years, be able to walk to the kitchen and do dishes. I want to be able to have kids and run around and play with them. I want to have a normal un-wheelchair bound life, and it upsets me that I have to revolve my life around my ED. I can't live my life the way I want to. Everyday I have to figure out "ok ,today I am doing this, this and this. Now how is it going to affect my ED and will I be able to do it because of my ED". And it kind of sucks because I am the kind of person who likes to wake up and look the day in the face and just charge. Now I have to carefully plan what I am doing each day. If I don't I end up suffering in the end because I made my joints work to hard. I know this is just my perspective, but I know from talking to others with disabilities, esp. ones that require assistive devices (canes, wheelchair, walker, crutches (the cool ones, or anyone...)), this is a hard thing. Feeling to dependent on someone and feeling like you have to constantly rely on someone. It's upsetting and frustrating at times. It's something you have to learn to work with...
That's it for the night, I'm going to curl up and watch the food channel.
Caitie
~~~
8 FEARS OF A CHONIC ILLNESS
Author Unknown
1. The fear of loss of control: Your family members may fear that they have lost control over their life because of their illness. They may have made plans for their future, which are put into question. They do not know from one day to the next how they will feel or whether they will ever be able to regain control of their life.
2. The fear of changed self image: Sometimes the one who is ill no longer views their self as the same person. They feel less confident, no longer attractive, physically weaker, and somehow damaged. Maybe they lost their fertility/virility, their gracefulness, their ability to earn a living or their willingness to believe in God, and see themselves as defective and unlovable.
3. The fear of dependency: Once the reality of the illness has settled in and the one you are caring for recognizes that their condition is not going away, they, too, fear their loss of independence. Hating to show any vulnerability, they may have difficulty accepting outside help, or, giving in to their fears, they may become overly needy and dependent on you. One of the respondents to the CARE NET study said it was becoming more and more difficult for her to care for her chronically ill daughter because the daughter expected everything to be done for her.
4. The fear of stigma: Another of the respondents commented "I share some with friends, but friends 'pull back' due to the illness." The one you are caring for may become frightened that others will distance themselves from them once they know they are sick, as if illness brought with it some sort of shame. If they are disfigured in some way or if the illness causes some apparent physical disability - an uneven gait, a drooping lip, they could be afraid that others will point and stare, causing them to withdraw into the confines of home.
5. The fear of abandonment: As a natural part of infancy, babies fear that their parents won't be available or loving when they need them. They cry when parents leave the room. These feelings stay within us and actually become intensified with an illness. Even if yours is the most affectionate and giving of families, your ill family member may grow frightened that you will tire of the drudgery that the constant care involves. This is normal and universal anxiety stems from the disease threatening their personal sense of security.
6. The fear of expressing anger: When those suffering realize that they have done everything possible, yet can "never" be cured of their disease, they may become intensely angry. It's easy to see how a chronic condition could give rise to lots of anger. Anger is a consequence of frustration. Yet many people are afraid to express anger because they have been taught that this is an unacceptable emotion or because they're afraid of driving others away with their rage. Or they're afraid of flying out of control. Anger kept inside can cause depression and a lack of energy.
7. The fear of isolation: Physical, social, and emotional isolation can result from a chronic illness. Ill ones, physically confined, lose the opportunity to socialize with old friends and often find themselves withdrawing from them. The fear of isolation usually doesn't occur immediately after their diagnosis. It takes time for ill ones to pull away from society or to recognize that friends, family, acquaintances, and co workers are avoiding them.
8. The fear of death: Although everyone who is diagnosed with a serious chronic illness fears death, Irene Pollin say that, ironically, death is usually not what they fear the most. Rather, their greatest fears revolve around how they will live with the illness until they die.
But today I was talking about my disease. That I feel like I am losing my independence. After 8 hours of straight typing and walking so much my joints are shot. I can't go through a normal day with out wanting to cry. And I feel like I am losing the one thing I wanted to always have, my independence. And it is upsetting. I don't want to be dependent on someone. I don't want to have to depend on someone to take care of me or have to do anything for me. I want to in five years, be able to walk to the kitchen and do dishes. I want to be able to have kids and run around and play with them. I want to have a normal un-wheelchair bound life, and it upsets me that I have to revolve my life around my ED. I can't live my life the way I want to. Everyday I have to figure out "ok ,today I am doing this, this and this. Now how is it going to affect my ED and will I be able to do it because of my ED". And it kind of sucks because I am the kind of person who likes to wake up and look the day in the face and just charge. Now I have to carefully plan what I am doing each day. If I don't I end up suffering in the end because I made my joints work to hard. I know this is just my perspective, but I know from talking to others with disabilities, esp. ones that require assistive devices (canes, wheelchair, walker, crutches (the cool ones, or anyone...)), this is a hard thing. Feeling to dependent on someone and feeling like you have to constantly rely on someone. It's upsetting and frustrating at times. It's something you have to learn to work with...
That's it for the night, I'm going to curl up and watch the food channel.
Caitie
~~~
8 FEARS OF A CHONIC ILLNESS
Author Unknown
1. The fear of loss of control: Your family members may fear that they have lost control over their life because of their illness. They may have made plans for their future, which are put into question. They do not know from one day to the next how they will feel or whether they will ever be able to regain control of their life.
2. The fear of changed self image: Sometimes the one who is ill no longer views their self as the same person. They feel less confident, no longer attractive, physically weaker, and somehow damaged. Maybe they lost their fertility/virility, their gracefulness, their ability to earn a living or their willingness to believe in God, and see themselves as defective and unlovable.
3. The fear of dependency: Once the reality of the illness has settled in and the one you are caring for recognizes that their condition is not going away, they, too, fear their loss of independence. Hating to show any vulnerability, they may have difficulty accepting outside help, or, giving in to their fears, they may become overly needy and dependent on you. One of the respondents to the CARE NET study said it was becoming more and more difficult for her to care for her chronically ill daughter because the daughter expected everything to be done for her.
4. The fear of stigma: Another of the respondents commented "I share some with friends, but friends 'pull back' due to the illness." The one you are caring for may become frightened that others will distance themselves from them once they know they are sick, as if illness brought with it some sort of shame. If they are disfigured in some way or if the illness causes some apparent physical disability - an uneven gait, a drooping lip, they could be afraid that others will point and stare, causing them to withdraw into the confines of home.
5. The fear of abandonment: As a natural part of infancy, babies fear that their parents won't be available or loving when they need them. They cry when parents leave the room. These feelings stay within us and actually become intensified with an illness. Even if yours is the most affectionate and giving of families, your ill family member may grow frightened that you will tire of the drudgery that the constant care involves. This is normal and universal anxiety stems from the disease threatening their personal sense of security.
6. The fear of expressing anger: When those suffering realize that they have done everything possible, yet can "never" be cured of their disease, they may become intensely angry. It's easy to see how a chronic condition could give rise to lots of anger. Anger is a consequence of frustration. Yet many people are afraid to express anger because they have been taught that this is an unacceptable emotion or because they're afraid of driving others away with their rage. Or they're afraid of flying out of control. Anger kept inside can cause depression and a lack of energy.
7. The fear of isolation: Physical, social, and emotional isolation can result from a chronic illness. Ill ones, physically confined, lose the opportunity to socialize with old friends and often find themselves withdrawing from them. The fear of isolation usually doesn't occur immediately after their diagnosis. It takes time for ill ones to pull away from society or to recognize that friends, family, acquaintances, and co workers are avoiding them.
8. The fear of death: Although everyone who is diagnosed with a serious chronic illness fears death, Irene Pollin say that, ironically, death is usually not what they fear the most. Rather, their greatest fears revolve around how they will live with the illness until they die.
Thursday, November 20, 2008
Front porch ice skating is not good
One of the downsides to ED: Ice and you don't mix.
My apartment complex has a third party ice the sidewalks, which isn't until 11 am or so. It ticks me off to great amounts because I am out for work at 7:15. On Tuesday I got to go skating on my front porch (which is only 3 feet by 3 feet, barely). It resulted in a very nice dislocation of my knee. I had to sit in the ER for three hours just to get fixed. Which in itself was hell.
I got there at 7pm and got a room by 7:33. At 7:45 the doctor came in and I told her I had ED. Her response? "I don't know what Ehlers-Danlos syndrome is, so I don't feel right enough to take your case." She left with a promise of two aspirin and a new doctor. Not enough 10 minutes later I got told to walk (hahahaha...me walk...) to a new room. After an hour in there (about 8:40) I got pissed. I rang and rang for the nurse. Eventually a poor X-ray tech came to my room followed by a nurse and my incompetent doctor. "Oh ma'am we didn't know you moved rooms, no one informed us at the nurses station." Finally the attending came in with two asprin and took over my case. After all that I had a nice gentleman in the room next to me hold me down and hold my hand while the doctor snapped by knee back into place...ow. I'm on crutches now but damn did that hurt.
And I am not allowed to file any more complaints against my complex so I have to suck it up and hope winter wont be to bad, but I do live in North East Ohio and I believe I just heard the news say 10 inches of snow in Akron. My worry is it won't be a simple dislocation next time, it will be a full out broken bone.
I need an apartment that is disability accesible, safe, and that cares for their residents.
:)
My apartment complex has a third party ice the sidewalks, which isn't until 11 am or so. It ticks me off to great amounts because I am out for work at 7:15. On Tuesday I got to go skating on my front porch (which is only 3 feet by 3 feet, barely). It resulted in a very nice dislocation of my knee. I had to sit in the ER for three hours just to get fixed. Which in itself was hell.
I got there at 7pm and got a room by 7:33. At 7:45 the doctor came in and I told her I had ED. Her response? "I don't know what Ehlers-Danlos syndrome is, so I don't feel right enough to take your case." She left with a promise of two aspirin and a new doctor. Not enough 10 minutes later I got told to walk (hahahaha...me walk...) to a new room. After an hour in there (about 8:40) I got pissed. I rang and rang for the nurse. Eventually a poor X-ray tech came to my room followed by a nurse and my incompetent doctor. "Oh ma'am we didn't know you moved rooms, no one informed us at the nurses station." Finally the attending came in with two asprin and took over my case. After all that I had a nice gentleman in the room next to me hold me down and hold my hand while the doctor snapped by knee back into place...ow. I'm on crutches now but damn did that hurt.
And I am not allowed to file any more complaints against my complex so I have to suck it up and hope winter wont be to bad, but I do live in North East Ohio and I believe I just heard the news say 10 inches of snow in Akron. My worry is it won't be a simple dislocation next time, it will be a full out broken bone.
I need an apartment that is disability accesible, safe, and that cares for their residents.
:)
Monday, November 17, 2008
Welcome
Dear friend / loved one,
I’m sending this letter to help you understand my feelings as I deal with my EDS and the changes it’s brings to my life. I am scared, I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones?
If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears. I am angry! EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing the simplest of tasks. If I appear angry please understand it is the disease/syndrome I am angry with, not you.
Please don't assume you know what is best for me. EDS has affected my joints, not my mind; I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences.
I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think your are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me from various outings. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.
Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done so much research and I keep up on current treatment options. I speak with my doctor (s) regularly, if there is a possible treatment out there, I will know about it.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue.
Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. I want you to know that the pain from EDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.
Finally, please remember that I am the same person I was before I was diagnosed with this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I’m being me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
~~~~
That is the website for the Ehlers-Danlos National Foundation. It has been my hope and support link for the past year since I got diagnosed. I hope you use that site for more information. I hope this blog will open you up to the personal side of Ehlers-Danlos syndrome (or just ED). I hope this blog will open your eyes to the world of a disabled person. I want to be a voice that stands out among many. Ill try and keep this updated once a week, probably more. I'll post personal experiences, I'll post stories or letters like the one above (all written by others with chronic illness, or those written with ED). I hope you open up your eyes and see the world in a new light. I hope I can keep you a faithful reader of this blog.
Thanks!
Caitie :)
I’m sending this letter to help you understand my feelings as I deal with my EDS and the changes it’s brings to my life. I am scared, I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones?
If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears. I am angry! EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing the simplest of tasks. If I appear angry please understand it is the disease/syndrome I am angry with, not you.
Please don't assume you know what is best for me. EDS has affected my joints, not my mind; I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences.
I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think your are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me from various outings. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.
Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done so much research and I keep up on current treatment options. I speak with my doctor (s) regularly, if there is a possible treatment out there, I will know about it.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue.
Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. I want you to know that the pain from EDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.
Finally, please remember that I am the same person I was before I was diagnosed with this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I’m being me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
~~~~
That is the website for the Ehlers-Danlos National Foundation. It has been my hope and support link for the past year since I got diagnosed. I hope you use that site for more information. I hope this blog will open you up to the personal side of Ehlers-Danlos syndrome (or just ED). I hope this blog will open your eyes to the world of a disabled person. I want to be a voice that stands out among many. Ill try and keep this updated once a week, probably more. I'll post personal experiences, I'll post stories or letters like the one above (all written by others with chronic illness, or those written with ED). I hope you open up your eyes and see the world in a new light. I hope I can keep you a faithful reader of this blog.
Thanks!
Caitie :)
Subscribe to:
Comments (Atom)