Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna**************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 My dear Donna,I cannot say I know how you feel because this disease is different for all us. I just wanted to let you know I get it, I soo get it, I wish I didn't get it, but this is the life we were given. At the same time I can't help but see how blessed we are that we are able to see the silver lining God has provided us in our lives, the friends we've met, the lessons we have learned, the internal strength that drives each and every one of us to keep on fighting. I think no matter how many years we battle this whether it be 39 or 16 (me) that the decision over what works for us will change, somedays the struggle to get out of bed will be so heart wrenching that we will just want to stay in bed and other days the struggle our lives have been will motivate us to get up and try anything knowing that a good day is one of the best blessings in life. Donna you are a constant reminder to me that no matter where my life takes me, that I will be able to do anything and to just keep fighting. You are my hero!With so much love; (JAS, 23)ajaoky@... wrote: JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna**************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703 Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Donna, You’re great. You put life and this disease in perspective in an amazing way. I’m thinking of you and wishing you the best. (and Ezra, 11 yr. old systemic) On 4/17/08 10:30 AM, " ajaoky@... " <ajaoky@...> wrote: JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna ************** Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Thanks to Donna and to for your inspiration and determination! You both are great examples for our kids!! (and for us moms :-)) Jinny (11, pauci) On Thu, 17 Apr 2008 10:30:01 EDT ajaoky@... writes: JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna**************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.(http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Donna: I hope you are feeling better tonight and that your decision has made a difference. You are one of the rocks of this list and one of my personal heroes. I know through you that no matter what this monster is that is hurting my baby, she will be ok. And yes you have had to make some very tough decisions in your care, but I hope in some small way you are comforted in knowing what monster you are fighting. I cannot say the same for my sweet Hannah. I would love a name for this monster and plan to help her, but so far we have not been that lucky. We take life one day at a time and I thank God for every good day he grants her. I have also learned through you, to never, ever give up with the battles we are facing. You are a hero to my family. Beth & Hannah, 11, unspecified arthritis w/hypermobility; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) thank yous JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.(http://autos. aol.com/used? NCID=aolcmp00300 000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2008 Report Share Posted April 18, 2008 Donna- I really like that you posted your deliema of dealing with the PREDATOR (aka prednisone as named at my local JA Camp). I hope this will only be a short- term need and will get you back going again. Especialy dealing with so many stressors not only healthwise but social/family stressors, it makies sense that the disease gets out of control and needs to be realed back in. I hope that this does the trick for you real fast and as you always say " Keep hanging tough " Love yas Issadora On Thu, Apr 17, 2008 at 7:29 PM, Beth Yohnk <yohnkmom@...> wrote: Donna: I hope you are feeling better tonight and that your decision has made a difference. You are one of the rocks of this list and one of my personal heroes. I know through you that no matter what this monster is that is hurting my baby, she will be ok. And yes you have had to make some very tough decisions in your care, but I hope in some small way you are comforted in knowing what monster you are fighting. I cannot say the same for my sweet Hannah. I would love a name for this monster and plan to help her, but so far we have not been that lucky. We take life one day at a time and I thank God for every good day he grants her. I have also learned through you, to never, ever give up with the battles we are facing. You are a hero to my family. Beth & Hannah, 11, unspecified arthritis w/hypermobility; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) thank yous JRA ...after 39 years..... I woke up yesterday with a decision that HAD to be made, it could not be delayed anymore. Funny thing is, it was not a huge decision, really. It was just a decision. Do I take my dose pack of methylprednisolone or do I not? I have been in so much pain, unable to do the simplest of tasks without putting frown lines on my aging face. Stepping out of my van only to hold onto the door panel for 3-4 minutes before I could take the few steps to my my back porch and pull myself up the few steps I have. A few mornings ago my son woke up choking and I cried because it took all I had to get to him and make sure he was ok. He was, I wasn't. My life does not suck, this disease does! Recently, I spoke to a parent whose 14 year old daughter was not in agreement to the very same decision I was about to make,so it makes me wonder , does it ever stop? But I suppose I know the answer. It doesnt stop. Life with JRA is never easy. I have often said its not all bad. As a result I have met the most wondeful people. However, given the choice I know none of us would choose this disease for our children or ourselves. The pain, the lack of mobility, the doctors, hospitals, medications and therapy. Come on, none of this fun! Heck just trying to decide what doc to call when something is bothering you is a difficult decision. I am so mad at this monster and given the opportuntiy would take a weapon of mass destruction and destroy it however, this is not an option. It is what it is and we have to live with it. I made my decision and despite knowing its awful side effects I chose to start the dose pack. I woke up better and look I can type a long , boring letter to tell you guys..... I am so glad to know I have you guys and that you all have each other and I know together we can make a difference. hugs and hangin tight! Donna************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.(http://autos. aol.com/used? NCID=aolcmp00300 000002851) -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2010 Report Share Posted June 13, 2010 > I get cramping in my legs because my electrolytes are off/depleted. Or more specifically, I think leg cramping is one of 3 deficiencies -- calcium, magnesium, or potassium. I know that I have felt better supplementing or eating foods high in these minerals. > Underwire bra -- that had not occurred to me yet, either! That's a hard > one to leave behind! The next time I buy glasses, I already know they > have to be plastic not metal (which they are now). Some have found that the plastic eyeglasses still have enough metal in them to cause problems (there is usually a metal wire embedded in the plastic, plus the hinges). I find that contact lenses or going without glasses are the best options when on the computer or near intense sources of EMF. > I have had a pet theory that it is my huge load of heavy metals that > causes my electrical sensitivity. I have just started to do green > smoothies (a very small amount, in my case) -- the chlorophyll in the > greens was binding heavy metals so well, that I had to back down from 4 > cups per day to 1/2 cup per day. My brain was in chaos and pain, from > too much heavy metal mobilization at once. I was wondering if this > out-flux of heavy metals from my body, via the green smoothies, might be > part of why I am so much more sensitive right now. Anyone had any > experience like this? I've seen some claim that the green superfoods (spirulina, chlorella, blue green algae) mostly just " stir up " the heavy metals, and don't help much in getting them out of the body. So you may need to limit your use of these or even discontinue them until your metal load is diminished. Also, anything that mobilizes metals is probably going to make your ES worse short-term. I know that my ES was its absolute worst when I was taking lots of chlorella. Marc Quote Link to comment Share on other sites More sharing options...
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