Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 I called my Rheumy today and told her that I am once again worse....legs are swelling raynauds still the same mild fevers so now after saying she wouldnt put me on MTX she is now putting me on it. The nurse said it could take 3 months to feel bettor. I sure hope I.ll be at Mayo before then. Primary said my medicaid wants more information first so ..fingers crossed.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 Hi Kimberlee, I remember the disapointment early on when having to cancel activities because of being too sick. It was just heartbreaking. I wish you the best with the medications though. I did want to suggest that you don't get too bundled up when having fevers. When I do, it just drives my fever higher. I love to snuggle especially when feverish and my temps just go up when I do. This is just what I learned in the hospital when so very sick. Hope all have a better day and it is warm wherever you live. Smiles to you, From: beakergirl73@... Subject: update just a quick update: saw rheumy today, he incresed my demon pills (MTX) to 20 mg weekly and added phenergan (thankfully) Extended my disability through 4/30/11 but I will see him the week before that to discuss returning to work at that time. He says we are still on track to start Kineret in 3 weeks, but he has decided to keep me on MTX as well while on the kineret since my joint pain has been getting worse. He is still confident that the kineret will stop the daily fevers (I can't wait for them to go away) doctor says I still can not go to the NASCAR races at TMS next weekend hugs, Kimberlee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 , Thanks for the suggestion, because I do bundle up under several blankets because I get chills with the fever. I will try just putting on a warmer shirt and using one lighter blanket. hugs, Kimberlee Subject: RE: update To: stillsdisease Date: Thursday, March 31, 2011, 2:40 PM Hi Kimberlee, I remember the disapointment early on when having to cancel activities because of being too sick. It was just heartbreaking. I wish you the best with the medications though. I did want to suggest that you don't get too bundled up when having fevers. When I do, it just drives my fever higher. I love to snuggle especially when feverish and my temps just go up when I do. This is just what I learned in the hospital when so very sick. Hope all have a better day and it is warm wherever you live. Smiles to you, From: beakergirl73@... Subject: update just a quick update: saw rheumy today, he incresed my demon pills (MTX) to 20 mg weekly and added phenergan (thankfully) Extended my disability through 4/30/11 but I will see him the week before that to discuss returning to work at that time. He says we are still on track to start Kineret in 3 weeks, but he has decided to keep me on MTX as well while on the kineret since my joint pain has been getting worse. He is still confident that the kineret will stop the daily fevers (I can't wait for them to go away) doctor says I still can not go to the NASCAR races at TMS next weekend hugs, Kimberlee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 Hi ; I can tell you about a experance I had in the ER from one of my many visits. I went to the ER for a very bad Flair Up and was waiting on a gurney and was Shivering so bad I could not control myself. I told the Nurse and she just put another blanket on me. I was having like cold Shivers with a fever like your's and I put the blanket over my face and breathed under the blanket with my warm breath and the warm breath made it warmer under the blanket and the Shivers started to slow down. It was like I had a small heater under my blanket. It worked and I will still now breath under the blanket if needed. I hope this will help you with the Shivers because I know how bad they can be. Wish You Well ! GARY ----- Forwarded Message ---- To: Stillsdisease Sent: Thu, March 31, 2011 8:36:41 AM Subject: RE: update  ,  Thanks for the suggestion, because I do bundle up under several blankets because I get chills with the fever. I will try just putting on a warmer shirt and using one lighter blanket.  hugs,  Kimberlee Subject: RE: update To: stillsdisease Date: Thursday, March 31, 2011, 2:40 PM Hi Kimberlee, I remember the disapointment early on when having to cancel activities because of being too sick. It was just heartbreaking. I wish you the best with the medications though. I did want to suggest that you don't get too bundled up when having fevers. When I do, it just drives my fever higher. I love to snuggle especially when feverish and my temps just go up when I do. This is just what I learned in the hospital when so very sick. Hope all have a better day and it is warm wherever you live. Smiles to you,  From: beakergirl73@... Subject: update  just a quick update: saw rheumy today, he incresed my demon pills (MTX) to 20 mg weekly and added phenergan (thankfully) Extended my disability through 4/30/11 but I will see him the week before that to discuss returning to work at that time. He says we are still on track to start Kineret in 3 weeks, but he has decided to keep me on MTX as well while on the kineret since my joint pain has been getting worse. He is still confident that the kineret will stop the daily fevers (I can't wait for them to go away) doctor says I still can not go to the NASCAR races at TMS next weekend hugs, Kimberlee                      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 Gail (KY) First hugs to you as yes you are in a stress pool with not much you can control in it. Now let us all know if that wait and see works for you as I know its never worked for me . I say that because you also need to take good care of your self not just for you but also for all the ones you love also. If you think your stressed and worried I bet if the truth be told so are they but about you more then them self's . kind of works that way with people when they are surrounded with loved ones each worries about the others more then them self's yet taken good care of them self's is also what helps take some of the stress away even if its a very little bit it still is helping lighten that load some. so with that I will end this on the note not only will I say a prayer for your Daughter and husband but also for you and you have no way out of that hugs  The  Redneck  Marty G      I watch the sands of time run threw the hour glass of my life knowing I can not change what has passed. All I can do is live for today and hope for tomorrow and that it's a better day then the one I am leavening here today As I move into the one filled with hope that’s called tomorrow. Marty G 3/29/2011 To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
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