Monday, February 28, 2011
Sunday, January 16, 2011
Really?? Surely this must be a mistake
Rheumatoid Arthritis Treatment Option | CIMZIA (certolizumab pegol)
Did you know that nearly every type of aggressive treatment for people who have Rheumotoid Arthritis is a type of drug that affects the immune system??
Well, okay, perhaps if you have RA, then this is common knowledge and perhaps the fact that you do not really have a lot of choices when it comes to keeping damage control to your joints minimal, the risks outweigh the chances of a weakened immune system and upper respiratory infections as the most common side effects.
But lets propose for the sake of argument, that you have already been diagnosed with CVID, a rare but treatable disease that has weakened your immune system already and now, you finally have answers to the pain and stiffness in your joints but also the immense pain you have been suffering when you wake up and find your arms, hands, elbows have extreme numbness, tingling and yes, pain. Yup, not just carpal tunnel tingle, I mean PAIN so much so that you are sobbing before you even know where you are or that you are not even awake yet.
Now let us put all of this together, and by now, of course we are not talking in third person any longer. You, the reader, know that it is me and if you are familiar with any of those diseases then you would be shaking your head in acknowledgment of the irony that I my physician, who I thank so much for sending me to the Hemo/Onco because he understood by looking at extensive bloodwork he had ordered for me that to treat me traditionally with these types of RA meds would certainly harm me if not kill me. I am not being dramatic. I am being honest and speaking from many hours of research on both of these, CVID, or Common Variable Immune Diffiency, and Rheumatoid Arthritis. See, I can not even spell those, and must go back and use spell check. This is how ignorant I am on what is taking over my life. Once very normal, active and the jester in my social circle, (There is no social in my vocab. now)I am confined most days to my home, I do not feel like I should drive far, for fear that if I have an episode, I can not drive back home. Home to my refuge, my cocoon of safety and familiarity.
Last night, my son became sick. I had felt sick earlier the day before when we drove 45 minutes to pick up my daughter from her boarding school. I ran to the bathroom and then had to lie down in the car. Thankfully, I had some sores that were getting infected on my hands earlier in the week, so I did my immune injections a day earlier so this virus thing did not affect me too bad. My poor son threw up all night even though we tried to get phenergan to stay down. I do not think he would have allowed me to put it where I knew it could not be thrown back up but he at least would not have had such a terrible time. Anyway, this story has no point. Much like my existence at times, I feel like it does not have any significant value since no one can depend on me, I am always sick and there was a time when I never complained of anything, and now, I have become the most annoying wuss I would have always made a comment about in my life before THIS.
So, I say this as my right hand has decided it is not going to work any longer because its fingers are numb, be very grateful for small things, even your ability to fight off the common cold and if by chance you have a wonderful husband who takes care of you if you do happen to get sick, then you better make sure he knows you love him and you better be thankful for physicians who still exist who goes over your files thoroughly and does what is in YOUR best interest. Not his, or his bank account or just because he has people waiting in other rooms to see him but because he took an oath. Something that many physicians lose over time....that compassion, that ability to see each patient as an individual, not just another body, another complaining whiner as I seem to feel I have become.
Oh and speaking of.... This physician looked high and low for a safe alternative to the RA treatments that would not harm me further AND he ceased ALL treatments he previously had prescribed after the tests he ordered came back to reveal RA was not the first thing needing to be addressed. Thank you Dr. Greg Eudy. Yes, he is my age, 37 and he is quickly becoming a leader in his field. I feel old and not just because my body is stiff, bones ache, and I look like a little elderly lady getting up after I sit for more than a few minutes. (No offense to those lil ladies that have no problem getting around, and actually are in amazing shape).
I tell myself that I can put mind over matter and pretend that this does not exist. I have always been excellent at denial. However, I stopped trying to trick my mind, heart or body after it did not work when Steph died. I am getting off of the subject at hand. This week I plan to see a Holistic physician who uses an electromagnetic energy analyzer to not only find out what exactly is going on in each and every cell of my body, but supposedly, it will also be able to tell the reaction my body will have to any medication or treatment BEFORE it is tried. Sounds hokey right? Well, read up on it as I did and you will understand that when someone like me, in pain constantly, unable to know what my body will feel like on any given moment, and perhaps you could get just a glimpse of why we try any and all things.
Again, I only posted this because I have not, in the past, as they say.."gone there". I am reluctant to speak with people about any of these things. I fear they believe somehow that I must have done something to make it happen. Perhaps they are correct? I do not know. I only know that in my life prior to this STUFF, I believed without a doubt that I could "will" the things that I desired for myself and my family with positive energy. When I could not use this "will" to save my sister not only from dying, but suffering as well, I quit believing in anything. God, yes, I do.....but that is not to say I was not a very angry believer. Well, this has to end and now it is time when we put our sweater and jacket on and as Mr. Rogers did, we say goodbye. See you tomorrow.
Did you know that nearly every type of aggressive treatment for people who have Rheumotoid Arthritis is a type of drug that affects the immune system??
Well, okay, perhaps if you have RA, then this is common knowledge and perhaps the fact that you do not really have a lot of choices when it comes to keeping damage control to your joints minimal, the risks outweigh the chances of a weakened immune system and upper respiratory infections as the most common side effects.
But lets propose for the sake of argument, that you have already been diagnosed with CVID, a rare but treatable disease that has weakened your immune system already and now, you finally have answers to the pain and stiffness in your joints but also the immense pain you have been suffering when you wake up and find your arms, hands, elbows have extreme numbness, tingling and yes, pain. Yup, not just carpal tunnel tingle, I mean PAIN so much so that you are sobbing before you even know where you are or that you are not even awake yet.
Now let us put all of this together, and by now, of course we are not talking in third person any longer. You, the reader, know that it is me and if you are familiar with any of those diseases then you would be shaking your head in acknowledgment of the irony that I my physician, who I thank so much for sending me to the Hemo/Onco because he understood by looking at extensive bloodwork he had ordered for me that to treat me traditionally with these types of RA meds would certainly harm me if not kill me. I am not being dramatic. I am being honest and speaking from many hours of research on both of these, CVID, or Common Variable Immune Diffiency, and Rheumatoid Arthritis. See, I can not even spell those, and must go back and use spell check. This is how ignorant I am on what is taking over my life. Once very normal, active and the jester in my social circle, (There is no social in my vocab. now)I am confined most days to my home, I do not feel like I should drive far, for fear that if I have an episode, I can not drive back home. Home to my refuge, my cocoon of safety and familiarity.
Last night, my son became sick. I had felt sick earlier the day before when we drove 45 minutes to pick up my daughter from her boarding school. I ran to the bathroom and then had to lie down in the car. Thankfully, I had some sores that were getting infected on my hands earlier in the week, so I did my immune injections a day earlier so this virus thing did not affect me too bad. My poor son threw up all night even though we tried to get phenergan to stay down. I do not think he would have allowed me to put it where I knew it could not be thrown back up but he at least would not have had such a terrible time. Anyway, this story has no point. Much like my existence at times, I feel like it does not have any significant value since no one can depend on me, I am always sick and there was a time when I never complained of anything, and now, I have become the most annoying wuss I would have always made a comment about in my life before THIS.
So, I say this as my right hand has decided it is not going to work any longer because its fingers are numb, be very grateful for small things, even your ability to fight off the common cold and if by chance you have a wonderful husband who takes care of you if you do happen to get sick, then you better make sure he knows you love him and you better be thankful for physicians who still exist who goes over your files thoroughly and does what is in YOUR best interest. Not his, or his bank account or just because he has people waiting in other rooms to see him but because he took an oath. Something that many physicians lose over time....that compassion, that ability to see each patient as an individual, not just another body, another complaining whiner as I seem to feel I have become.
Oh and speaking of.... This physician looked high and low for a safe alternative to the RA treatments that would not harm me further AND he ceased ALL treatments he previously had prescribed after the tests he ordered came back to reveal RA was not the first thing needing to be addressed. Thank you Dr. Greg Eudy. Yes, he is my age, 37 and he is quickly becoming a leader in his field. I feel old and not just because my body is stiff, bones ache, and I look like a little elderly lady getting up after I sit for more than a few minutes. (No offense to those lil ladies that have no problem getting around, and actually are in amazing shape).
I tell myself that I can put mind over matter and pretend that this does not exist. I have always been excellent at denial. However, I stopped trying to trick my mind, heart or body after it did not work when Steph died. I am getting off of the subject at hand. This week I plan to see a Holistic physician who uses an electromagnetic energy analyzer to not only find out what exactly is going on in each and every cell of my body, but supposedly, it will also be able to tell the reaction my body will have to any medication or treatment BEFORE it is tried. Sounds hokey right? Well, read up on it as I did and you will understand that when someone like me, in pain constantly, unable to know what my body will feel like on any given moment, and perhaps you could get just a glimpse of why we try any and all things.
Again, I only posted this because I have not, in the past, as they say.."gone there". I am reluctant to speak with people about any of these things. I fear they believe somehow that I must have done something to make it happen. Perhaps they are correct? I do not know. I only know that in my life prior to this STUFF, I believed without a doubt that I could "will" the things that I desired for myself and my family with positive energy. When I could not use this "will" to save my sister not only from dying, but suffering as well, I quit believing in anything. God, yes, I do.....but that is not to say I was not a very angry believer. Well, this has to end and now it is time when we put our sweater and jacket on and as Mr. Rogers did, we say goodbye. See you tomorrow.
Wednesday, January 12, 2011
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