Hope you are having a better evening than I am. Seems my RA wants to get the best of me, and but I have been fighting back by keeping positive and spending much of my time counting my blessings. Of which I have many! But that doesn't mean I cannot get frustrated at times too! :) So I thought I would post and hopefully get some good advise. Here's my vent... I was having some side effects and my Rheumy thought it might be my Enbrel. (Hopefully not!). But we couldn't take a chance so I had to come off Enbrel for 6 weeks and right back on the Prednisone. I had came off the Prednisone a few months ago and lost 20lbs and had a waist back! And I swore I would never take it again. So much for that decision! It seems like everytime I think I get this RA incheck, I have a side effect and I have to take a break and start all over. Right now though, I am going on a trip in 2 weeks to see my family and I am so stiff I can hardly move. And my feet are hurting so badly. I have been off and on Prednisone for 30 years so I understand the ropes. The doctor said to increase it if the RA gets worse, but I am having trouble getting myself to do that. Because, by the time I leave for the trip I'll have all the side effects back and I will be puffed up again (In just two weeks I am already in the stomach area) and it is even harder to move around when you have all that water weight. But most of all how am I going to keep up with the social end of this trip when it takes every bit of strength I have to see my friends now? And that is not jam packed socializing like I am about to encounter on this trip!
Like I said, I always have such a good positive attitude and I don't think I am losing that...I just think I have a need to fix this problem and I don't have a solution! Do you? Thanks for your replies! Susan Lee
How unfortunate you are at this crossroads again. But as you said, you know the ropes. So, I guess it comes down to priorities. You know you have to have the prednisone temporarily. That seems to be a given, especially if you are going to travel. You know that the side effects and the new complications are the constant in our life's equation. We cannot change that. And, to be able to get off the prednisone and have to go on it again has to be devasting. I can't even get down on mine and admire you for doing it in the first place. Prioritiy one is keeping your health under control. Secondly, it seems this trip is awfully important to you. But you need the prednisone to help you make that trip. Hopefully, you can talk to your family and help them understand that you are going to have to take rests. Maybe they won't understand a lot of your limitations, but they should understand that part. If you can find one family member that can give you a place to go rest as an oasis in the middle of all that activity that might help. I really understand about how worn out one can get and how hard it is to see just your normal friends. When the group activities are there, plop yourself down and let people come to you. Think of this as a temporary set back. When I hit one of these, and I do often, I tell myself I can start again. And, that's what I do. So, it is a step back, but only for the moment. You said that you are retaining water because of the prednisone. See about getting a diruretic and potassium from your doctor. You need both and you should call and talk to your RD about the water weight. Just taking that might help make you feel more comfortable and not so bloated. You know the problems. Take control of what you can and then let go of the rest. It is all you can do. I'm so sorry your going through this. I know it's tough. It seems when we have an event that we are really looking forward to doing like the rest of the healthy world does, our RA has it's calendar maked too, and shows up just in time to ruin it for us. Hang in there! Maybe a small dose of Prend. until your back from your trip will be enough to help but not cause too much swelling. Just a thought. Thanks all of you! One thing I noticed in all of you is the warm and caring way you related to my situation. I thank you all! dbmy3 is so right about the RA calendar...that sentence says it all! And, I think you are right, I will increase my dose right before I leave. One thing that makes me constantly count my blessings...My husband is so kind and helpful that it will make this trip to my kids and the relatives more comfortable. And my kids really understand and how much I want to feel regular in an irregular situation. They seem to sense my needs without me saying anything and they all make me feel so comfortable. Maybe it is from living with a Mom who had health problems, but it made them so sensitive to others and always grateful. I am so proud of each and everyone of them! It is my husbands relatives that make me a bit uncomfortable because I really haven't shared much with them. But, maybe I don't give them enough credit and they understand more than I think. Who knows? But I think I will take Deanna's advise and when I am with them I will just plop myself down and let them come to me! :) And thanks Deanna too for your comforting note. I have only been taking half my dose of diruretic which I will increase to the full dose before I leave. And yes, I do take potassium too. Good advise. And Linda K, I so hope you have a wonderful time on your trip. I so agree that we have to keep going and adjust as we go along. Please let us know all about your trip when you return. Hope you are all having a better day! Susan Lee
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