Started a new infusion drug last week. Decided to go with Actemra. Hoping this one helps more! So far I have not been able to cut back on the prednisone but a trying to stay positive that it will work!!
New symptoms and pains pop up at every corner. When do they stop? New Pains this month include my shoulder popping out of socket whenever I reach, or stretch with my right arm. Which is frequent! Every time I pick up my son, every time I grab a bottle, even picking up something small, it pops. Then it is excruciating pain! It works its way back in but is constantly sore and I can not lay on it or move it much! I mentioned it to the rheum doc and his reply was "oh it is probably just your RA, if you want I can give you a cortisone shot" Really, more shots??? Crap!! Any feelings out there on this? Is this something that will go away once my RA is under control? Does RA ever get under control?? Each time I have infusion I am the youngest one in the room. I always am next to a chatty older lady who tells me that she has been on her meds for 6 years and is loving it. I hope I get that way! I guess once you get over all the anger, and confusion you can be more optimistic. I hope I get to that point soon! I was always the optimistic person. That has changed and I hate it.
Prednisone continues to help me move, and help me gain weight! I have never been so hungry. Not even when I was pregnant! It also is putting white bumps (maybe calcium deposits) on my skin. My hands, back and shins are the worst. Most you cannot see but if you run your hand over them it feels like sandpaper. My husband will not rub my back saying it is disgusting. That does not make me feel so hot. I didn't ask for this and am trying to survive and live day by day and hopefully one day can once again feel good, want to laugh and dance. I have lost my fun. RA SUCKS. I am too tired to attempt fun.
I am starting to feel like even if I do start to feel relief something new will just come to the forefront. In the last month I have been struggling with support, depression, pain, understanding and much more. I am sure all you out there have been on that page before or are currently. Any Advice??
Somethings I have been struggling is sharing my difficulties with my family and friends. I don't know how to answer "How are you feeling" It also feels like some close loved ones just ignore it, I have even noticed it is a topic they steer away from, or even have stopped calling. I am not sure how to fix things. I also need to talk to my 8 year old about the disease and am unsure what he can understand and what is too overwhelming. I hate missing out on running around with him, wrestling with my boys, going on walks, skipping, dancing, and goofing off. He needs to know I want to. He needs to know that I love him and the things I stopped doing are not because of him. I do not want to always have to say...I don't feel well baby" I don't want to be the boring parent!! :) I am supposed to be the fun one!
I struggle with my feelings and depression. I probably should see a therapist about the feelings and anger I have about the disease and how it is changing my life so much. I probably should get on an anti-depressant but dang, I am on soooooo many meds I do not want to add more! I also already have medical bills adding up and do not need to keep adding more! However, my family is struggling. My marriage is struggling. I do not know if it is because I am not the same person anymore. If it is because I was the strong one and am now wavering. If it is because I am a grump?? Or is it things that have nothing to do with my RA? It is hard on us all.
Staying positive in all my grumpiness is not an easy task! All I can do is go day by day. Hug my boys while I still can no matter how it hurts. Watch them smile, laugh and grow. Learn more and Live more. Once I find a new job with less hours I would like to find a support group or even just visit the arthritis foundation in Denver. Meet more people like me and hopefully find a medicine that works! I hear so many stories of kids with JRA and remind myself how hard that has to be and to take their strength and positive energy and use it, learn from it and hope that I will!
In the meantime, I will continue to try to focus on staying positive, understanding the disease, figure out how to share with my family, and hopefully get back on track!
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