"I will not let anyone walk through my mind with their dirty feet" Gandhi
My feet! They hurt! They hurt to stand, they hurt to walk and they hurt to be propped up. The RA came first in my feet. I've worn a walking boot....for a year. I wear braces on both feet. Xrays show much damage to both feet from the RA eating the bones away. However, I will stand strong. I will use God's word to stand on. "His Word is a lamp unto my feet and a light unto my path." I may not physically walk strong, or be able to do the things I have been able to do in the past, or the things I would love to do now; but I will follow where He leads me on this path called life. God, I pray for your patience and your strength for each day to trust You with You will for my life.
Sunday, August 14, 2011
Wednesday, July 6, 2011
Changes in the Air
My Remicade infusion was yesterday. And, I saw Dr. Vaidya while getting the infusion. If this one doesn't "take" like the last one didn't, I will be switching to either Enbrel or Humira. I have been researching Enbrel vs Humira. I think I lean towards Enbrel if I do have to switch.
I don't want to switch if I don't have to. I am afraid of running out of options eventually. I am afraid of alot of where this disease will take me. What ifs.....I can't keep working; I get an infection; Rick gets tired of me in pain all the time..... I had chest pain last night after getting the infusion. Was it indigestion? I didn't eat that much. Or a reaction to the Remicade?
Of course, I don't want to discuss this with many people. Most just think I am being overly dramatic or just don't want to hear it.
On a good note, I work 3 more days and then we are on vacation for a week. Deciding if we are going to Presque Isle. It will be fun if we do. I'm ok if we don't.
I don't want to switch if I don't have to. I am afraid of running out of options eventually. I am afraid of alot of where this disease will take me. What ifs.....I can't keep working; I get an infection; Rick gets tired of me in pain all the time..... I had chest pain last night after getting the infusion. Was it indigestion? I didn't eat that much. Or a reaction to the Remicade?
Of course, I don't want to discuss this with many people. Most just think I am being overly dramatic or just don't want to hear it.
On a good note, I work 3 more days and then we are on vacation for a week. Deciding if we are going to Presque Isle. It will be fun if we do. I'm ok if we don't.
Friday, July 1, 2011
July 4th Weekend Coming Up
It's Friday and I am off on an FMLA day today. The swelling is back in my hands and feet and they all hurt like crazy. And I am tired. I think I could sleep today away. My infusion is Tuesday. I wish I could get Dr Vaidya to sit for a few minutes and listen and give me some answers. Even if it is an "I don't know"....just so I feel like he has heard me! If he says this is just the way the disease is, then it is what it is. If there are changes or tweaks to my medications, then let's try it.
On to the good stuff! We get to keep Zac and Emily from Saturday night til Tuesday morning. I miss them so much! So, today, I am resting and hoping I have the energy I need for this 4th of July weekend!
On to the good stuff! We get to keep Zac and Emily from Saturday night til Tuesday morning. I miss them so much! So, today, I am resting and hoping I have the energy I need for this 4th of July weekend!
Thursday, June 23, 2011
I Wonder Why It Matters
Today I am off work resting my body. My feet hurt, my hands hurt and I'm tired. So, I am going to use the first note I have ever written about having RA. I posted this on Facebook and I want to use it as my first blog entry here. I called it "I Wonder Why it Matters?"
I wonder why it matters to me that people understand what RA is? That it is not just your "grandmother's arthritis". That it is understood that it is a systemic autoimmune disease in which my body is destroying itself. I don't know how I got it.
Just because I smiled today and didn't complain and tell you how bad it hurts, doesn't mean I am not in tremendous pain. I just know no one wants to hear it all the time. It makes people uncomfortable to talk about it. And people want to cure it. If it was curable, I would not be using some of the most costly medications on the market today...which cause cancer and many other undesireable side effects. Medications that if I do not take, I will be in a wheelchair and no longer able to walk. Many times today under my breath, God and I have talked about how I was going to make it through the day.....or even take the next step.
Maybe it is just a basic human need to be understood. There are more and more days I feel like a failure. Because there are more and more days I can't keep my house the way I like it or have the energy to do many things after a full day of work. Or keep my grandchildren who are the light of my life! I want people to know I am not lazy. I also don't want to be defined by my disease. But,I don't know how to do that. It's always on my mind, because my body always hurts. And I am always tired. Not just tired but "fatigued". Tired beyond an explanation. Remember that my body is fighting itself and slowly destroying itself. That tends to wear one out. I am not depressed. I am tired.
I live by the "Spoon Theory". Written by Christine Miserandino, it is a wonderful explanation as to how one gets through a day with having a chronic systemic disease that saps strength and energy. I hope you will look it up and read it. I guess that is what I want most. For you to care enough to research what I am living with. Understand what medications I take and why I take them. Why the "snake oil" cures aren't cures and will harm me by not using conventional medications. I want you to know that the commercials you see on TV for RA meds are BS. Most people's lives are not lived normally even with the medications. But we all hope that it slows down the damage being done inside our bodies. I don't want sympathy or pity. I just want awareness and understanding.
Thanks for reading this! I am blessed with a wonderful family and truly good friends who I love very much and love me!
. I will be adding more to this blog as life happens. I have never tried this before. Maybe it will help me work through my feelings. Maybe it will be a waste of time. I hope not. I am not an eloquent writer. But, I want to keep a journal of my feelings and life happenings
I wonder why it matters to me that people understand what RA is? That it is not just your "grandmother's arthritis". That it is understood that it is a systemic autoimmune disease in which my body is destroying itself. I don't know how I got it.
Just because I smiled today and didn't complain and tell you how bad it hurts, doesn't mean I am not in tremendous pain. I just know no one wants to hear it all the time. It makes people uncomfortable to talk about it. And people want to cure it. If it was curable, I would not be using some of the most costly medications on the market today...which cause cancer and many other undesireable side effects. Medications that if I do not take, I will be in a wheelchair and no longer able to walk. Many times today under my breath, God and I have talked about how I was going to make it through the day.....or even take the next step.
Maybe it is just a basic human need to be understood. There are more and more days I feel like a failure. Because there are more and more days I can't keep my house the way I like it or have the energy to do many things after a full day of work. Or keep my grandchildren who are the light of my life! I want people to know I am not lazy. I also don't want to be defined by my disease. But,I don't know how to do that. It's always on my mind, because my body always hurts. And I am always tired. Not just tired but "fatigued". Tired beyond an explanation. Remember that my body is fighting itself and slowly destroying itself. That tends to wear one out. I am not depressed. I am tired.
I live by the "Spoon Theory". Written by Christine Miserandino, it is a wonderful explanation as to how one gets through a day with having a chronic systemic disease that saps strength and energy. I hope you will look it up and read it. I guess that is what I want most. For you to care enough to research what I am living with. Understand what medications I take and why I take them. Why the "snake oil" cures aren't cures and will harm me by not using conventional medications. I want you to know that the commercials you see on TV for RA meds are BS. Most people's lives are not lived normally even with the medications. But we all hope that it slows down the damage being done inside our bodies. I don't want sympathy or pity. I just want awareness and understanding.
Thanks for reading this! I am blessed with a wonderful family and truly good friends who I love very much and love me!
. I will be adding more to this blog as life happens. I have never tried this before. Maybe it will help me work through my feelings. Maybe it will be a waste of time. I hope not. I am not an eloquent writer. But, I want to keep a journal of my feelings and life happenings
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