Comments on: Sympathy and Living with Rheumatoid Arthritis Symptoms http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/ Bringing information & encouragement to fight RA Sat, 11 Feb 2012 13:28:43 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Joanne Davidson http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-173608 Joanne Davidson Fri, 03 Feb 2012 03:43:32 +0000 http://rawarrior.com/?p=1664#comment-173608 I am so thankful for this site. I have been diagnosed for over a year now with some success at times and then setbacks....always wondering if it was something I did...too much activity or something I ate...dairy, gluten...I am currently on methotrexate and prednisone...have tried humira, arava and enbrel....waiting on approval for simponi. I used to work 40 plus hours a week in a field where you only spoke positive about everything....until this...it knocked me down to working very little and all the people I worked with just couldn't believe I couldn't push through in spite of my pain and tiredness. And of course, they knew people who had ra and worked just fine....so what was my problem. I still have alot of fatique-every day of the week...pain travels and now having trouble with my eyes and headaches...I don't want their sympathy either...just please don't judge me...especially if you do not have ra or have never tried these medicines and experienced their side effects. I just had my old director text me and ask how I was..I was having a really rough day so I decided to tell the truth and let her know just how I was doing....the response was Hmmm lol I am so thankful for this site. I have been diagnosed for over a year now with some success at times and then setbacks….always wondering if it was something I did…too much activity or something I ate…dairy, gluten…I am currently on methotrexate and prednisone…have tried humira, arava and enbrel….waiting on approval for simponi. I used to work 40 plus hours a week in a field where you only spoke positive about everything….until this…it knocked me down to working very little and all the people I worked with just couldn’t believe I couldn’t push through in spite of my pain and tiredness. And of course, they knew people who had ra and worked just fine….so what was my problem.
I still have alot of fatique-every day of the week…pain travels and now having trouble with my eyes and headaches…I don’t want their sympathy either…just please don’t judge me…especially if you do not have ra or have never tried these medicines and experienced their side effects.

I just had my old director text me and ask how I was..I was having a really rough day so I decided to tell the truth and let her know just how I was doing….the response was Hmmm lol

]]> By: Kelly Young http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-128779 Kelly Young Sun, 04 Dec 2011 23:37:07 +0000 http://rawarrior.com/?p=1664#comment-128779 Thank you, Maggi. Very nicely done. The advice of a veteran is always valuable. Thank you, Maggi. Very nicely done. The advice of a veteran is always valuable.

]]> By: Maggi Henthorne http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-128725 Maggi Henthorne Sun, 04 Dec 2011 23:00:19 +0000 http://rawarrior.com/?p=1664#comment-128725 What living 49 years with RA has taught me: 1. Everyone experiences it differently. My diagnosis in 1962 solved the dilemma of "why are my wrists sore and rigid?" My wonderful doc talked with me, listened to me, researched and we learned from each other. 2. Pregnancy may eliminate your symptoms. Enjoy the break if you are so fortunate. 3. Leave the physician who thinks he/she must be in charge. 4. Deformaties may develop suddenly or slowly. Find out how, and if, surgery is a good option for you. 5. Other people may under estimate your abilities. Reassure them with word and deed. 6. Use every way possible to get and stay physically strong. It increases all your capabilities. 7. Investigate new treatments. If they seem out of your financial reach, contact the pharmaceutical company. There are programs available to assist you. 8. Most important: You are not your desease. Believe it and live it every minute of every day. 9. Accept help only if you really need it. If you don't, decline it very thankfully, assuring the person that should you need assistance with something, you will remember and call on him. 10. Stay busy, happy and assured, even if a little Sam-E or a pill from your doc is occasionally required. 11. Overdoing once in a while is good for the soul and gets the job done. But---I stress--but--only once in a while. And if you must push, take short breaks, then a good rest when you've accomplished your goal. 12. Love others generously in any and all ways you are able. Now--don't over do that, either. Smother is not love. Be genuine and considerate on whatever levels seem appropriate for the relationship, close, family or passing acquaintance. Live, laugh, love. What living 49 years with RA has taught me:
1. Everyone experiences it differently.
My diagnosis in 1962 solved the dilemma of “why are my wrists sore and rigid?” My wonderful doc talked with me, listened to me, researched and we learned from each other.
2. Pregnancy may eliminate your symptoms. Enjoy the break if you are so fortunate.
3. Leave the physician who thinks he/she must be in charge.
4. Deformaties may develop suddenly or slowly. Find out how, and if, surgery is a good option for you.
5. Other people may under estimate your abilities. Reassure them with word and deed.
6. Use every way possible to get and stay physically strong. It increases all your capabilities.
7. Investigate new treatments. If they seem out of your financial reach, contact the pharmaceutical company. There are programs available to assist you.
8. Most important: You are not your desease. Believe it and live it every minute of every day.
9. Accept help only if you really need it. If you don’t, decline it very thankfully, assuring the person that should you need assistance with something, you will remember and call on him.
10. Stay busy, happy and assured, even if a little Sam-E or a pill from your doc is occasionally required.
11. Overdoing once in a while is good for the soul and gets the job done. But—I stress–but–only once in a while. And if you must push, take short breaks, then a good rest when you’ve accomplished your goal.
12. Love others generously in any and all ways you are able. Now–don’t over do that, either. Smother is not love. Be genuine and considerate on whatever levels seem appropriate for the relationship, close, family or passing acquaintance.
Live, laugh, love.

]]> By: Deidre http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-79370 Deidre Thu, 28 Jul 2011 15:34:29 +0000 http://rawarrior.com/?p=1664#comment-79370 I think there is no sympathy for us RA victims, because its something that can't be seen visibly. We feel the pain inside and there is really nothing for other people to see. I feel like people think I'm a baby because sometimes it hurts too bad to walk. I think there is no sympathy for us RA victims, because its something that can’t be seen visibly. We feel the pain inside and there is really nothing for other people to see. I feel like people think I’m a baby because sometimes it hurts too bad to walk.

]]> By: LisaVandehei http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-65595 LisaVandehei Tue, 03 May 2011 15:13:41 +0000 http://rawarrior.com/?p=1664#comment-65595 Awesome article.. I do not want sympathy either all the time but maybe just a better understanding of the disease to my family. I will share this article with my mom. PS I also had a kidney infection and ignored it a few days and ended up in ICU a few yrs ago.. Be careful!! :) Lisa Awesome article.. I do not want sympathy either all the time but maybe just a better understanding of the disease to my family. I will share this article with my mom. PS I also had a kidney infection and ignored it a few days and ended up in ICU a few yrs ago.. Be careful!! :) Lisa

]]> By: Dr. S. Akerkar http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-46002 Dr. S. Akerkar Sun, 19 Dec 2010 18:02:17 +0000 http://rawarrior.com/?p=1664#comment-46002 Dear Preethi, Uncontrolled RA is a wretched condition indeed. It is definitely not an old man's disease. In fact, studies have shown that Indian RA patients are younger than the western counterparts. We have two peaks in the onset of RA in India. One at 20- 30 years age group & the second peak is at the 40- 50 years age group. The disease has a tendency to start/ flare up after delivery due to the hormonal changes. There is a definite treatment for RA & the disease does go in remission. Why dont you have a look at the blogposts Conquering Rheumatoid arthritis: http://t.co/gDMpW7P & Do all patients with Rheumatoid arthritis fare badly?: http://t.co/XV25wbQ Believe me; time is function in RA. If you have taken ayurvedic treatment for quite some time & not finding sufficient relief, you need to take a 'stop-loss' decision asap. See a Rheumatologist asap. We definitely do have effective treatment for RA. Hope your RA goes into remission at the earliest. If you can tell me your geographical location, I can assist you locate the nearest recognized Rheumatologist. Knowing the long term course of uncontrolled RA, it is heart-breaking to see somebody not getting access/ initiated on DMARDs in today's age. All the best. Dear Preethi,

Uncontrolled RA is a wretched condition indeed. It is definitely not an old man’s disease. In fact, studies have shown that Indian RA patients are younger than the western counterparts. We have two peaks in the onset of RA in India. One at 20- 30 years age group & the second peak is at the 40- 50 years age group. The disease has a tendency to start/ flare up after delivery due to the hormonal changes.

There is a definite treatment for RA & the disease does go in remission. Why dont you have a look at the blogposts Conquering Rheumatoid arthritis: http://t.co/gDMpW7P &
Do all patients with Rheumatoid arthritis fare badly?: http://t.co/XV25wbQ

Believe me; time is function in RA. If you have taken ayurvedic treatment for quite some time & not finding sufficient relief, you need to take a ‘stop-loss’ decision asap. See a Rheumatologist asap. We definitely do have effective treatment for RA.

Hope your RA goes into remission at the earliest. If you can tell me your geographical location, I can assist you locate the nearest recognized Rheumatologist.

Knowing the long term course of uncontrolled RA, it is heart-breaking to see somebody not getting access/ initiated on DMARDs in today’s age.

All the best.

]]> By: Rachel TenBruggencate http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-46000 Rachel TenBruggencate Sun, 19 Dec 2010 17:48:11 +0000 http://rawarrior.com/?p=1664#comment-46000 Oh Kelly. That is enough tears for one day. I had not read that before. What a cruel and horrible thing this RA. Oh Kelly. That is enough tears for one day. I had not read that before. What a cruel and horrible thing this RA.

]]> By: Kelly Young http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-45996 Kelly Young Sun, 19 Dec 2010 17:08:07 +0000 http://rawarrior.com/?p=1664#comment-45996 That is a good example Rachel. It reminds me of the breast cancer story - same problem - we are so used to extreme pain. http://rawarrior.com/living-with-a-spouse-with-chronic-illness-part-1/ That is a good example Rachel. It reminds me of the breast cancer story – same problem – we are so used to extreme pain. http://rawarrior.com/living-with-a-spouse-with-chronic-illness-part-1/

]]> By: Rachel TenBruggencate http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-45993 Rachel TenBruggencate Sun, 19 Dec 2010 16:58:25 +0000 http://rawarrior.com/?p=1664#comment-45993 I have been living with pain for so long now. Two years ago my appendix burst. I went to the emergency room and told them I was extreme pain. I was eventually operated on. I awoke to my Doctor standing over. His words were, " You were in bad shape. Your appendix burst." I said, "Yeah I hurt. That's why I came in." And then said, with tears in eyes, " You never showed how bad it was. I'm sorry you had wait so long." I told him I'm living with pain everyday. He touched my forehead and told me i was a strong woman.. I wish others would know how strong I am. I feel so weak with this damn disease. I have been living with pain for so long now. Two years ago my appendix burst. I went to the emergency room and told them I was extreme pain. I was eventually operated on. I awoke to my Doctor standing over. His words were, ” You were in bad shape. Your appendix burst.” I said, “Yeah I hurt. That’s why I came in.” And then said, with tears in eyes, ” You never showed how bad it was. I’m sorry you had wait so long.” I told him I’m living with pain everyday. He touched my forehead and told me i was a strong woman.. I wish others would know how strong I am. I feel so weak with this damn disease.

]]> By: Kelly Young http://rawarrior.com/sympathy-and-living-with-rheumatoid-arthritis-symptoms/comment-page-1/#comment-45991 Kelly Young Sun, 19 Dec 2010 16:27:43 +0000 http://rawarrior.com/?p=1664#comment-45991 Have you read the blog of Dr. Akerkar in India - <a href="http://www.arthritissupportboard.com">click here</a>? He is working to fight this taboo. There is not a diet that will slow or prevent the damage of RA. I really hope that your RA will go into remission, but it is more likely with the right medical treatment. RA is not an old-man's disease. It strikes women of child-bearing years the most. It even strikes babies, so I guess that is another myth. I know how hard it is with a baby. My RA came on stronger after the birth of my last baby - it is so sad when you cannot lift or feed your baby. Bless your heart. Have you read the blog of Dr. Akerkar in India – click here? He is working to fight this taboo. There is not a diet that will slow or prevent the damage of RA. I really hope that your RA will go into remission, but it is more likely with the right medical treatment. RA is not an old-man’s disease. It strikes women of child-bearing years the most. It even strikes babies, so I guess that is another myth. I know how hard it is with a baby. My RA came on stronger after the birth of my last baby – it is so sad when you cannot lift or feed your baby. Bless your heart.

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