Friday, October 17, 2014
Thursday, October 16, 2014
Friday, September 12, 2014
Women & Pain. No Not Pain in the Butt Women!
I am a woman in pain. For my Sweet Hubby (SW) I am certain I can also be a huge "pain in the butt". For now however I am only addressing chronic pain. For those who are in mainstream normality what is your first thought when you hear the words "fibromyalgia, chronic fatique syndrome, back pain"? Do you believe they are valid complaints? Do you believe they have consistent real pain? Do you think these words really relate to phantom or "in the head" pain?
I am here to tell you chronic back pain, fibromyalgia and chronic fatique syndrome (although I only have chronic back pain) are REAL. I have however come upon health practitioners who downplay and thus under treat those with the above and many more health complaints "merely" because they come from women. Discrimination? You bet. Read on my friends.
http://americannewsreport.com/nationalpainreport/women-in-pain-report-significant-gender-bias-8824696.html
Blessings,
Amy
I am here to tell you chronic back pain, fibromyalgia and chronic fatique syndrome (although I only have chronic back pain) are REAL. I have however come upon health practitioners who downplay and thus under treat those with the above and many more health complaints "merely" because they come from women. Discrimination? You bet. Read on my friends.
http://americannewsreport.com/nationalpainreport/women-in-pain-report-significant-gender-bias-8824696.html
Blessings,
Amy
Would You? Could You?
Would You? Could You? Dare You?
As a small challenge, I would ask of you to think about the feasibility of sitting in a recliner for 8 hours at a time. You cannot stand up or get out of the chair. You must keep your dominant arm straight and not move it at all. You will need to exercise self control if needing the bathroom. You will need to only snack while in the chair. For 8 hours? No? Okay, how about 4 hours? Better. Will you be able to read a book one-handed (you cannot move your dominant arm)? Will you be able to get on your laptop? Watch movies one armed? Watch TV?
Think about this for a small moment.
Now try to fit this into your work schedule? Picking up kids from school and getting them to their karate lessons? Every other day. If you don't go, you risk death. You must schedule everything else around these three days per week. Every week. Regardless of holidays, birthdays etc.
Think you could do it for one day?
How about 3 days a week, FOREVER?
Sound like fun?
More than 400,000 people in America can do this. Is it fun? NO! Do they do it anyway? Yes!
Would You? Could You sign YOUR organ donor card?
Would You? Could You consider being a living donor? Would you consider giving away one of your kidneys, part of your liver, bone marrow to give life to another?
Think about it. Do it!
Blessings,
Amy
Wednesday, September 10, 2014
Tuesday, September 9, 2014
"First, Do No Harm"
Do you know in the dialysis industry any patient can receive what is called an "involuntary discharge"? Do you know what an involuntary discharge involves? Basically it is when a dialysis clinic and/or doctor refuses to treat a patient. A patient is basically "fired" from ever being treated in a specific dialysis facility and/or doctor ever again. Do you understand what this means? It means finding another doctor and/or dialysis facility somewhere close to where you live and getting all your records, insurance and transportation transferred over. Currently there are approximately 400,000 dialysis patients in the U.S., yet in 2011 more than 440 dialysis patients received an ID. Read this amazing and eye opening blog by Beth Whitten an social worker in Missouri who run the Missouri Kidney Program's educational services. Thank you & Blessings, Amy
http://homedialysis.org/news-and-research/blog/60-involuntary-discharge-what-happened-to-the-oath-first-do-no-harm
http://homedialysis.org/news-and-research/blog/60-involuntary-discharge-what-happened-to-the-oath-first-do-no-harm
Sunday, September 7, 2014
Be safe. You aren't alone.
Insomnia again last night. My eyes wouldn't let me rest until the new day began to break. Still, I was thankful for the time I had. I was sluggish and foggy headed all morning. I came upon this. It gave me the lilt I needed. Be safe my friends. You aren't alone.
Blessings,
Amy
Amy
Are You Beauty.....Or Are You The Beast?
I am a beauty. I am a beast. Dialysis can do that to you. Dialysis is tough. It is not for the faint of heart. We are warriors in many ways.
"I have to use the BATHROOM. NOW!! For the love of God and all that is holy P U L E E Z, let m off so I can use the bathroom!" I can still remember the man's screams. He has been on dialysis for about 3 hours. I am doing a treatment in-center this time. He sits across the room. He is angry. He is lashing out at the nurses, the patient care technicians, the other patients. He is angry at having to sit in the chair for 4 hours every Monday, Wednesday and Friday. He is angry that he cannot move his arm or the 2 needles that are pulling blood out of him and pushing it back into him will become dislodged in some way spewing arterial blood everywhere. Its happened before. It is not pretty. His back aches, he is hungry yet cannot eat or drink anything while there. He is chastised by a nurse for having a cough drop in his mouth and told to spit it out. He is bored as he cannot read (can't hold the books), cannot use his laptop or phone -- "not allowed" they say. When he needs to use the bathroom he has to wait for someone to come and temporarily disconnect him from the machine. They don't like to do it, so they delay in hopes they can make him wait until the end of his treatment. He is cold. He wears sweats, knit cap, gloves and a blanket. He is still cold. His wife is not allowed to visit or even sit next to him while he does his treatment. He tries to sleep, but cannot. There are 24 patients in this big room right along with him. Alarms all around sound off, like a chorus of machines searching for help. The nurses work at the computer, work at the supply station. They chat with one another. They ignore the machines. Most of the patients sleep. They all huddle beneath blankets and mittens and hats. Some listen to music or TV by headphones. They are all quiet until this man's screams break through the lull.
He is angry because his muscles are cramping. He is angry at losing his job, his home, his friends, his economic status and a decent life. He hates the world and everything in it. He cannot escape this place. It is part of his life day in and day out. Day after day. Week after week. Month after month. If lucky enough, year after year.
For the rest of his life.
He acts like a beast. He snaps with snide remarks. He is rude. He is hateful. He is mean, arrogant and testy. He swears now and then but is sure to belittle the nurses that try to care for him. He is a beast.
By the time he slowly walks to his car after his treatment he notes he left home 5 1/2 hours earlier. Another 20 minutes to get home and the day is virtually gone. Home. Snack. Bed. Sleep. Ah, blissful sleep. He chooses an apple with a teaspoon of peanut butter. Can't have bananas. Can't have yogurt. Can't have nuts or crackers. Can't have more than a few ounces to drink so he chooses some ice water. None of it tastes good. He eats anyway knowing he must. He crawls on to his bed and sleep devours him. The beast. The beastly beast.
By morning he feels like a new person. He has a piece of toast and a hard boiled egg for breakfast. Can't have bacon, or cereal, or pancakes or biscuits and gravy. "Not allowed" they say. But he feels so much better. He mows the lawn. He sits on the deck and soaks in the sun while he reads a book. He checks his email. He envelops his wife with a tender hug and a sweet kiss. He tells her kind things and helps her around the house. He sings to the music blasting the air. He watches his kids play in the small pool. He jumps in splashing them with water.. He tells jokes. He checks the oil and fluids in the cars and tinkers around in the garage. He feels thankful. He feels hopeful. He feels content, happy. He feels beautiful. He feels like a beauty.
While he watches the sun set, a small droop in his face appears. Tomorrow is another dialysis day. He feels anxious, nervous. He does not want to go. It has been a good day today. A happy day.
Many of us are both Beauty and the Beast. Can you love us all the same?
Blessings,
Amy
"I have to use the BATHROOM. NOW!! For the love of God and all that is holy P U L E E Z, let m off so I can use the bathroom!" I can still remember the man's screams. He has been on dialysis for about 3 hours. I am doing a treatment in-center this time. He sits across the room. He is angry. He is lashing out at the nurses, the patient care technicians, the other patients. He is angry at having to sit in the chair for 4 hours every Monday, Wednesday and Friday. He is angry that he cannot move his arm or the 2 needles that are pulling blood out of him and pushing it back into him will become dislodged in some way spewing arterial blood everywhere. Its happened before. It is not pretty. His back aches, he is hungry yet cannot eat or drink anything while there. He is chastised by a nurse for having a cough drop in his mouth and told to spit it out. He is bored as he cannot read (can't hold the books), cannot use his laptop or phone -- "not allowed" they say. When he needs to use the bathroom he has to wait for someone to come and temporarily disconnect him from the machine. They don't like to do it, so they delay in hopes they can make him wait until the end of his treatment. He is cold. He wears sweats, knit cap, gloves and a blanket. He is still cold. His wife is not allowed to visit or even sit next to him while he does his treatment. He tries to sleep, but cannot. There are 24 patients in this big room right along with him. Alarms all around sound off, like a chorus of machines searching for help. The nurses work at the computer, work at the supply station. They chat with one another. They ignore the machines. Most of the patients sleep. They all huddle beneath blankets and mittens and hats. Some listen to music or TV by headphones. They are all quiet until this man's screams break through the lull.
He is angry because his muscles are cramping. He is angry at losing his job, his home, his friends, his economic status and a decent life. He hates the world and everything in it. He cannot escape this place. It is part of his life day in and day out. Day after day. Week after week. Month after month. If lucky enough, year after year.
For the rest of his life.
He acts like a beast. He snaps with snide remarks. He is rude. He is hateful. He is mean, arrogant and testy. He swears now and then but is sure to belittle the nurses that try to care for him. He is a beast.
By the time he slowly walks to his car after his treatment he notes he left home 5 1/2 hours earlier. Another 20 minutes to get home and the day is virtually gone. Home. Snack. Bed. Sleep. Ah, blissful sleep. He chooses an apple with a teaspoon of peanut butter. Can't have bananas. Can't have yogurt. Can't have nuts or crackers. Can't have more than a few ounces to drink so he chooses some ice water. None of it tastes good. He eats anyway knowing he must. He crawls on to his bed and sleep devours him. The beast. The beastly beast.
By morning he feels like a new person. He has a piece of toast and a hard boiled egg for breakfast. Can't have bacon, or cereal, or pancakes or biscuits and gravy. "Not allowed" they say. But he feels so much better. He mows the lawn. He sits on the deck and soaks in the sun while he reads a book. He checks his email. He envelops his wife with a tender hug and a sweet kiss. He tells her kind things and helps her around the house. He sings to the music blasting the air. He watches his kids play in the small pool. He jumps in splashing them with water.. He tells jokes. He checks the oil and fluids in the cars and tinkers around in the garage. He feels thankful. He feels hopeful. He feels content, happy. He feels beautiful. He feels like a beauty.
While he watches the sun set, a small droop in his face appears. Tomorrow is another dialysis day. He feels anxious, nervous. He does not want to go. It has been a good day today. A happy day.
Many of us are both Beauty and the Beast. Can you love us all the same?
Blessings,
Amy
Friday, September 5, 2014
Let it go
I was reading through some posts on a facebook group called "I Hate Dialysis". I know it sounds really negative but its a great place to go to when I am feeling a little low. I know I can rely on friends there to let me vent, to allow me to educate, to learn from others' experiences. Sometimes (well many times) we fall into that trap of taking things personal. Then others respond and it ends up being this massive snowball that just grows and grows all out of proportion that doesn't represent anything from the original post. It becomes all demented and insignificant. Someone posted this picture from a Disney movie called Frozen. I had to laugh because in so many ways the picture, the words added "Let it go!" and the name of the movie all represent how I as a dialysis patient feel. I feel as if my life is frozen in time. You know? Like I am doing the same thing over and over and there is nothing remarkable to show I am moving forward. Do you ever feel as though you are frozen in time? Do you feel like you have no value or worth because you are not accomplishing something? I often have felt as though my value is nothing. I don't work. My children are raised and on their own. I am reliant on this machine to keep me alive every day. Every single day. Please think about that for just one moment. Every single day. Then I realize just as these words proclaim. I need to "Let it Go". My worth, my value is not dependent upon my accomplishments. I have value just because I am a living breathing being. So do you. Remember that. So do you. So for today, just "let it go". Remember you are valued. You are loved. You are important. If you need someone to talk to, send me an email. Many Blessings,
Amy
Amy
Thursday, September 4, 2014
Here are some tips on great kidney healthy foods. Enjoy
Kidney Healthy Foods.
http://www.kidney.org/news/ekidney/september14/7_Kidney_Friendly_Superfoods.cfm
Blessings,
Amy
http://www.kidney.org/news/ekidney/september14/7_Kidney_Friendly_Superfoods.cfm
Blessings,
Amy
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