Allie
07-28-2006, 09:57 AM
For people reading this down the line who do not know my story, I hope this provides you good information and advice....
My p&pa background: P at 13, first severe flare at 14, first spontaneous remission at 21 (lasted 6 months) I have had moderate coverage for most of my life. I developed mild pa at 27. I am 30 now with mild p & pa.
In a different context, Cancun stated in the thread “is food the cause?” … if we change what we put in them, we get better… I agree with 100%... But for obviously different reasons.
Thank God for Enbrel. I will be thrilled with I am through pregnancy, breast feeding, etc & will rejoin the ranks of the clear & pain free.
I realize not everyone clears with Enbrel or any biologic. I recognize each person has to find the right solution for them, and I am even more thrilled I have started my journey to develop the perfect (not just right) solution for me. For some that may be diet, but it is not for me. I do not choose to live my life without fruit, but I do choose to live me life p free. I can have both, and for me that works.
University of Michigan (arrgg, I am going to have to wash my mouth out.. Go State!), has documented research p and pa patients all have one key gene (different variations, but one main link nonetheless). The actual triggers p and pa are different in each person. For some it is stress, for some it is food, for some it is strep throat, etc. My number one cause is stress.
The time in my life I was at my most skinny (a size 6), most active in working out, I was reveling in my success. I had pledged at 21, I would be a Sr. Financial Analyst by the time I was 25. Right after my 25th birthday, I accepted a position with a top 5 Global Management Consulting firm as a Sr. Financial Analyst in charge of its Global Consolidations budget planning, forecasting and reporting. I was also, recently engaged.
As I was enjoying all my success and happiness, I was blind sided with 9/11/01 on my second day at work in my new job (Chicago closed down the city), the loss of my paternal grandfather 10/01, engagement of my brother & his order I not get married until AFTER him because he was older, the impending demise of the maternal grandfather (as I commuted back and for to MI every weekend to stay with him & give my mom a break. I put 10K miles on my car in a summer), and finally his passing in 07/02, my Mother’s break-down as she moved my grandmother in with her & eventual placement into an assisted living facility, my brother’s wedding 11/02, and finally my own in 5/03. I did not even realize how severe my psoriasis was until my Dermatologist informed me I was two hands, two legs, two feet and ¾ of a face from being e-thropic. I developed psoriatic arthritis during this stressful time. I would not change any of it for a minute. I may have not dealt with my stress as healthy as some, but with all I had going on – I am not sure there was a better way. If avoiding stress had meant I not spend this last summer with my Grandfather, I would be clear and miserable. I was absolutely devastated my Grandfather did not make it to my wedding. He was the one family member who also had p.
I truly hope each one of us will one day be able to be happy for each other regardless of our treatment choices. The day when saying - hey this is working for me. YIPPEE!!...Does not get slammed with side-effects or worse, being told they are an irresponsible parent for feeding toxins to a baby in breast milk. <To me that was one of the cruelest things a person can say to someone who did things according to traditional, age-old wisdom.>
I will hope for the day, when people realize EVERY decision is hard to make. Going into a treatment choice (be it alternative (food, vitamins, minerals, UV light treatment, etc) or prescription (Olux, Enbrel, Dovonex, Elidel, etc) therapy) is the equivalent to deciding if you want to have a child. Having a child is taking on enormous responsibilities. You cannot decide what you want or whether or not the child is healthy. All you can do is educate yourself, try to live as healthy as possible with the influence of independent studies, registered dieticians, and physicians then hope for the best. The best you can do for your health is to make the most educated decision possible & hope for the best.
Good Luck to all of you in your search for a perfect solution…
I have been very saddened by the state of the board over the last few weeks. While I realize (& was informed by a Moderator) this was the works of a troll, I cannot help but do some serious thinking about my roll in it as well. I came back to the boards earlier this year to enjoy and welcome the camaraderie, continue to learn and develop new friendships, while renewing old ones I had not nurtured.
First people get upset over the change in the boards, which I truly happened to like…
Then a troll – inflames the board. The aftermath has left me very sensitive to information, I am in high disagreement. (example: Statement “alternative medicine IS CHEAPER than prescription drugs” to me this is FALSE. I spent $40 a month on Enbrel, but I spend over a hundred on vitamins recommended by my Drs. Probiotic alone is $25) I feel like I should state these opinions, but to do so just inflames the board even more.
I wish you all luck on finding your solution for p & pa. I will visit often, but I am currently not planning on posting – unless I find something of real value I can add to the boards. Petty infighting is not one, and that is all that seems to be here of late. I am really saddened by all of this. I was so excited in the spring when I freed up my schedule to be on here again… But even my DH has pointed out how ornery I have been due to the state of the boards. (He knows this, because he will I ask & I will go into rant over a post) I hope you will find the common ground we all need to make this board as effective as possible at helping achieve support for our p & pa. WE ARE LIVING WITH P & PA EACH DAY!!! This board is for SUPPORT. Condescension and accusations do not go hand-in-hand with support. Heart felt responses on ensuring proper medical care (be it a naturopath or a traditional physician) & encouraging education to find the right solution for an individual is. I realize some people may feel my strong support of working with your physician is overkill, but one of the #1 misconceptions (according to Reader’s Digest) of alternative therapy is that it is safe. All treatments are safe with the guidance of a medical advisor, but they MUST be made with a consistent advisor. Seeking additional sources is great, but having one constant helps keep a central location for all your medical records.
I ask in closing, please read the boards with a grain of salt and use common sense when latching onto a solution. So far, nothing has proven to be effective for everyone. Biologics proved some help some, but not all… Diet adjustments have proven not all diets need the same adjustments. I wish you luck in finding your perfect solution.
My p&pa background: P at 13, first severe flare at 14, first spontaneous remission at 21 (lasted 6 months) I have had moderate coverage for most of my life. I developed mild pa at 27. I am 30 now with mild p & pa.
In a different context, Cancun stated in the thread “is food the cause?” … if we change what we put in them, we get better… I agree with 100%... But for obviously different reasons.
Thank God for Enbrel. I will be thrilled with I am through pregnancy, breast feeding, etc & will rejoin the ranks of the clear & pain free.
I realize not everyone clears with Enbrel or any biologic. I recognize each person has to find the right solution for them, and I am even more thrilled I have started my journey to develop the perfect (not just right) solution for me. For some that may be diet, but it is not for me. I do not choose to live my life without fruit, but I do choose to live me life p free. I can have both, and for me that works.
University of Michigan (arrgg, I am going to have to wash my mouth out.. Go State!), has documented research p and pa patients all have one key gene (different variations, but one main link nonetheless). The actual triggers p and pa are different in each person. For some it is stress, for some it is food, for some it is strep throat, etc. My number one cause is stress.
The time in my life I was at my most skinny (a size 6), most active in working out, I was reveling in my success. I had pledged at 21, I would be a Sr. Financial Analyst by the time I was 25. Right after my 25th birthday, I accepted a position with a top 5 Global Management Consulting firm as a Sr. Financial Analyst in charge of its Global Consolidations budget planning, forecasting and reporting. I was also, recently engaged.
As I was enjoying all my success and happiness, I was blind sided with 9/11/01 on my second day at work in my new job (Chicago closed down the city), the loss of my paternal grandfather 10/01, engagement of my brother & his order I not get married until AFTER him because he was older, the impending demise of the maternal grandfather (as I commuted back and for to MI every weekend to stay with him & give my mom a break. I put 10K miles on my car in a summer), and finally his passing in 07/02, my Mother’s break-down as she moved my grandmother in with her & eventual placement into an assisted living facility, my brother’s wedding 11/02, and finally my own in 5/03. I did not even realize how severe my psoriasis was until my Dermatologist informed me I was two hands, two legs, two feet and ¾ of a face from being e-thropic. I developed psoriatic arthritis during this stressful time. I would not change any of it for a minute. I may have not dealt with my stress as healthy as some, but with all I had going on – I am not sure there was a better way. If avoiding stress had meant I not spend this last summer with my Grandfather, I would be clear and miserable. I was absolutely devastated my Grandfather did not make it to my wedding. He was the one family member who also had p.
I truly hope each one of us will one day be able to be happy for each other regardless of our treatment choices. The day when saying - hey this is working for me. YIPPEE!!...Does not get slammed with side-effects or worse, being told they are an irresponsible parent for feeding toxins to a baby in breast milk. <To me that was one of the cruelest things a person can say to someone who did things according to traditional, age-old wisdom.>
I will hope for the day, when people realize EVERY decision is hard to make. Going into a treatment choice (be it alternative (food, vitamins, minerals, UV light treatment, etc) or prescription (Olux, Enbrel, Dovonex, Elidel, etc) therapy) is the equivalent to deciding if you want to have a child. Having a child is taking on enormous responsibilities. You cannot decide what you want or whether or not the child is healthy. All you can do is educate yourself, try to live as healthy as possible with the influence of independent studies, registered dieticians, and physicians then hope for the best. The best you can do for your health is to make the most educated decision possible & hope for the best.
Good Luck to all of you in your search for a perfect solution…
I have been very saddened by the state of the board over the last few weeks. While I realize (& was informed by a Moderator) this was the works of a troll, I cannot help but do some serious thinking about my roll in it as well. I came back to the boards earlier this year to enjoy and welcome the camaraderie, continue to learn and develop new friendships, while renewing old ones I had not nurtured.
First people get upset over the change in the boards, which I truly happened to like…
Then a troll – inflames the board. The aftermath has left me very sensitive to information, I am in high disagreement. (example: Statement “alternative medicine IS CHEAPER than prescription drugs” to me this is FALSE. I spent $40 a month on Enbrel, but I spend over a hundred on vitamins recommended by my Drs. Probiotic alone is $25) I feel like I should state these opinions, but to do so just inflames the board even more.
I wish you all luck on finding your solution for p & pa. I will visit often, but I am currently not planning on posting – unless I find something of real value I can add to the boards. Petty infighting is not one, and that is all that seems to be here of late. I am really saddened by all of this. I was so excited in the spring when I freed up my schedule to be on here again… But even my DH has pointed out how ornery I have been due to the state of the boards. (He knows this, because he will I ask & I will go into rant over a post) I hope you will find the common ground we all need to make this board as effective as possible at helping achieve support for our p & pa. WE ARE LIVING WITH P & PA EACH DAY!!! This board is for SUPPORT. Condescension and accusations do not go hand-in-hand with support. Heart felt responses on ensuring proper medical care (be it a naturopath or a traditional physician) & encouraging education to find the right solution for an individual is. I realize some people may feel my strong support of working with your physician is overkill, but one of the #1 misconceptions (according to Reader’s Digest) of alternative therapy is that it is safe. All treatments are safe with the guidance of a medical advisor, but they MUST be made with a consistent advisor. Seeking additional sources is great, but having one constant helps keep a central location for all your medical records.
I ask in closing, please read the boards with a grain of salt and use common sense when latching onto a solution. So far, nothing has proven to be effective for everyone. Biologics proved some help some, but not all… Diet adjustments have proven not all diets need the same adjustments. I wish you luck in finding your perfect solution.