Comments on: The Shifting Sand of Living with Rheumatoid Arthritis http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/ Bringing information & encouragement to fight RA Thu, 24 May 2012 14:37:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Belinda Langley RN http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-70534 Belinda Langley RN Fri, 10 Jun 2011 18:43:27 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-70534 Kelly your post made me cry. You so eloquently describe life with rheumatoid arthritis. You hit the nail on the head. Thank you. Kelly your post made me cry. You so eloquently describe life with rheumatoid arthritis. You hit the nail on the head. Thank you.

]]> By: Lyn http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-32574 Lyn Sun, 26 Sep 2010 17:16:07 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-32574 Loved your analogy of the shifting sand and RA. Yes, it changes, sometimes by the hour, and we need to remember that there are improvements as well as worsenings. Also that compensation is the name of the game, and never say "can't" till you've tried every possible alternative way to do something. Loved your analogy of the shifting sand and RA. Yes, it changes, sometimes by the hour, and we need to remember that there are improvements as well as worsenings. Also that compensation is the name of the game, and never say “can’t” till you’ve tried every possible alternative way to do something.

]]> By: Kelly Young http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-32573 Kelly Young Sun, 26 Sep 2010 17:11:14 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-32573 Karla, Thanks for those fabulous tips! I'm going to link to your comment on the travel tips post. :D I'm so glad you got to go to on a vacation. I wish I'd known you were at Disney. I went out there a couple weeks ago to meet another warrior-friend. Karla, Thanks for those fabulous tips! I’m going to link to your comment on the travel tips post. :D
I’m so glad you got to go to on a vacation. I wish I’d known you were at Disney. I went out there a couple weeks ago to meet another warrior-friend.

]]> By: Karla http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-32566 Karla Sun, 26 Sep 2010 16:43:48 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-32566 Kelly, We just returned from our first ever family vacation (and my first real vacation with RA), so your analogy about the beach really speaks to me. My husband and I chose to take our 2-year-old daughter to Disney World. We opted for the convenience of a Disney resort (Coronado Springs) and got a great deal with the off-season package. I packed like any mom preparing for vacation (with a few exceptions... braces, extra pain meds... etc.) And, away we went. Here's what I learned (and will add into my "adjustments" for vacationing next time): 1. When you check in to the resort, ASK them for a room that's closer to amenities (such as restaurants, bus stop, front desk). I made the mistake of not mentioning it and they gave us a room clear on the opposite side of the lagoon. After a few hours at the park walking around, there was it was darn near impossible to make it back to our room from the bus stop, let alone get all the way back to the main building to eat. 2. Plan to use an assistive device at least one level higher than you typically use. For example, if you normally use a cane to get around, reserve a wheel chair at the park... use a wheel chair? maybe it's a good idea to trade up for a few days for a scooter. I rate my RA on the mild-moderate side of things and typically can get enough rest between "adventures" -- so a brace or two is usually enough for me. But this trip had a LOT of walking and not enough resting. I really wish I had taken a cane to help out! 3. Be CAREFUL about the hotel pool. It was my daughter's first time EVER in a pool, so I probably got a little carried away showing her that it's OK to put your head under water. I blame that little activity (along with my not-so-hot immune system) for the flu bug that I brought home as my Disney souvenir. Lesson learned... no head under water and shower IMMEDIATELY after you get out of the pool. It was still a great vacation and I wouldn't trade it... even with the RA. Kelly,

We just returned from our first ever family vacation (and my first real vacation with RA), so your analogy about the beach really speaks to me.

My husband and I chose to take our 2-year-old daughter to Disney World. We opted for the convenience of a Disney resort (Coronado Springs) and got a great deal with the off-season package.

I packed like any mom preparing for vacation (with a few exceptions… braces, extra pain meds… etc.) And, away we went. Here’s what I learned (and will add into my “adjustments” for vacationing next time):

1. When you check in to the resort, ASK them for a room that’s closer to amenities (such as restaurants, bus stop, front desk). I made the mistake of not mentioning it and they gave us a room clear on the opposite side of the lagoon. After a few hours at the park walking around, there was it was darn near impossible to make it back to our room from the bus stop, let alone get all the way back to the main building to eat.

2. Plan to use an assistive device at least one level higher than you typically use. For example, if you normally use a cane to get around, reserve a wheel chair at the park… use a wheel chair? maybe it’s a good idea to trade up for a few days for a scooter.

I rate my RA on the mild-moderate side of things and typically can get enough rest between “adventures” — so a brace or two is usually enough for me. But this trip had a LOT of walking and not enough resting. I really wish I had taken a cane to help out!

3. Be CAREFUL about the hotel pool. It was my daughter’s first time EVER in a pool, so I probably got a little carried away showing her that it’s OK to put your head under water. I blame that little activity (along with my not-so-hot immune system) for the flu bug that I brought home as my Disney souvenir.

Lesson learned… no head under water and shower IMMEDIATELY after you get out of the pool.

It was still a great vacation and I wouldn’t trade it… even with the RA.

]]> By: Kelly Young http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-24632 Kelly Young Sat, 31 Jul 2010 18:22:27 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-24632 Hi Fran, Yes, that is what prednisone does to a lot of people. I hope you'll do well enough to go without it. Good luck with your treatment / regimen. Hi Fran,
Yes, that is what prednisone does to a lot of people. I hope you’ll do well enough to go without it. Good luck with your treatment / regimen.

]]> By: Fran http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-24574 Fran Sat, 31 Jul 2010 14:52:29 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-24574 I am 63 years old. I was diagnosed with RA on December 22, 2006. At the outset, I was put on prednisone [short term] and then began the methotrexate/enbrel regimen. On April 24, 2009 I was diagnosed with anal carcinoma. I received chemo and radiation treatment and have recently celebrated a year of being cancer free. SINCE methotrexate and enbrel suppress the immune system, it is my belief and that of my oncologist that these drugs did not cause the cancer but took away my body's ability to fight the cancer cells. And we all have cancer in our bodies. Thanks to a strong immune system, good diet, exercise, overall healthy lifestyle. Now I am taking plaquenil and sulfasalazine. I took myself off the small dose of prednisone that my rheumatologist prescribed once I was finished with the cancer treatment. {During that period, my RA was gone due to the strong drugs they gave me to fight the cancer]. My husband have adopted a vegan diet, very healthy. I am now into my third day of an elimination diet..I want to find out if wheat or corn trigger my RA flares. My hands, right ankle, neck and left shoulder are the areas of pain, stiffness, and discomfort. My rheumatologist prescribed a gel called Voltaran which I occasionally rub on the sore areas. I even have a jar of emu cream as well. MY hope is that the diet changes will reduce inflamation and put the RA into remission. I am glad to be off the prednisone as it made me edgy, hungry, depressed [I think depressed] and caused my skin to become very thin. I also take flax seed oil daily. I am very very skeptical about the RA drugs because of their many serious side effects. I'm so glad to have this web site. I am definitely looking for hopeful, promising alternatives. I am 63 years old. I was diagnosed with RA on December 22, 2006. At the outset, I was put on prednisone [short term] and then began the methotrexate/enbrel regimen. On April 24, 2009 I was diagnosed with anal carcinoma. I received chemo and radiation treatment and have recently celebrated a year of being cancer free. SINCE methotrexate and enbrel suppress the immune system, it is my belief and that of my oncologist that these drugs did not cause the cancer but took away my body’s ability to fight the cancer cells. And we all have cancer in our bodies. Thanks to a strong immune system, good diet, exercise, overall healthy lifestyle.
Now I am taking plaquenil and sulfasalazine. I took myself off the small dose of prednisone that my rheumatologist prescribed once I was finished with the cancer treatment. {During that period, my RA was gone due to the strong drugs they gave me to fight the cancer]. My husband have adopted a vegan diet, very healthy. I am now into my third day of an elimination diet..I want to find out if wheat or corn trigger my RA flares. My hands, right ankle, neck and left shoulder are the areas of pain, stiffness, and discomfort. My rheumatologist prescribed a gel called Voltaran which I occasionally rub on the sore areas. I even have a jar of emu cream as well. MY hope is that the diet changes will reduce inflamation and put the RA into remission. I am glad to be off the prednisone as it made me edgy, hungry, depressed [I think depressed] and caused my skin to become very thin. I also take flax seed oil daily. I am very very skeptical about the RA drugs because of their many serious side effects. I’m so glad to have this web site. I am definitely looking for hopeful, promising alternatives.

]]> By: Kelly Young http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-22339 Kelly Young Fri, 16 Jul 2010 15:21:14 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-22339 Wow, thank you Robyn. What a nice way to start my day! :heart: Wow, thank you Robyn. What a nice way to start my day! :heart:

]]> By: Robyn http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-22338 Robyn Fri, 16 Jul 2010 15:14:52 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-22338 Thank you for taking ugly and turning it inside out. Your words of knowledge and inspiration are a blessing. I thank God for leading me to you. Mere words cannot express the impact you have made in the lives of others, because you share, because you care. Thank you Thank you for taking ugly and turning it inside out. Your words of knowledge and inspiration are a blessing. I thank God for leading me to you. Mere words cannot express the impact you have made in the lives of others, because you share, because you care. Thank you

]]> By: Kelly Young http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-9207 Kelly Young Sun, 28 Mar 2010 17:41:08 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-9207 Denise, That's so nice - folks will think that you are my sister or something... O:-) Honestly, thank you for taking time to comment. That does help me keep on. Denise, That’s so nice – folks will think that you are my sister or something… O:-)

Honestly, thank you for taking time to comment. That does help me keep on.

]]> By: Denise http://rawarrior.com/shifting-sand-of-living-with-rheumatoid-arthrits/comment-page-1/?show=comments-9182 Denise Sun, 28 Mar 2010 13:36:47 +0000 http://rawarrior.com/the-shifting-sand-of-rheumatoid-arthritis/#comment-9182 Kelly, once again, thank you for all your insight and your gift of sharing yourself with others. It is such a blessing and so refreshing to read anything you post. You are one phenomenal woman and I am amazed at your tenacity to keep on keeping on with such pain. Wishing for you good things, D Kelly, once again, thank you for all your insight and your gift of sharing yourself with others. It is such a blessing and so refreshing to read anything you post. You are one phenomenal woman and I am amazed at your tenacity to keep on keeping on with such pain.
Wishing for you good things,
D

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