Tags
arthritis, Banerjee, Carla Kienast, hip surgery, replacement surgery, rheumatoid arthritis, shoulder replacement, Shoulder Surgery, Simponi, Undifferentiated Spondylarthropathy
Today this project is over. I’ve already worked 30 hours this week and it’s only 7:30 am on Monday morning. I’ve also worked the last three weekends, so my stamina is about to give up. I don’t know whether it’s RA or just my age showing, but I finally went home from the office last night about 11:00 pm. Even a year or so ago, I would have pulled an all nighter (which some of my team did). However, my Celebrex, Evoxac (which I take for Sjrogren’s Syndrome), and husband were all home, so I slipped away in the night leaving others to burn the midnight oil. In apology, I did bring them breakfast when I came back in this morning at 7:00.
I don’t want to say that RA has become a more prominent part of my life. Just like my cleft chin, I know it’s there but I don’t necessarily pay attention to it. I have, however, become more a part of a community of people who are dealing with RA. For example, I start my morning reading the latest adventures of Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com) and worry that he’s ill when the post isn’t up as early as normal. I’ve found that there are a lot of people who find an outlet in dealing with the rainbow of issues of RA by writing in blogs and sharing their experiences. Thanks to the marvels of modern cyberspace, we are able to connect. Sometimes this helps the writer, sometimes (like me and RA Guy), it helps the reader. In any case, it helps us know that we are not alone, that others are walking (or stumbling) in our footsteps, and we can learn from their experiences with the disease, the drugs, and even some of the weird things that you deal with.
I have to admit that I’ve been in denial on more than one occasion. Evidence of that was when I went off MTX after my hip replacement, with the result of having to have my shoulder replaced just a few months later. But I can’t help but think, as many of us do on our “good” days, that, “What if I really don’t have RA?” This is especially easy for me, because I have a sero-negative form of the disease which means there has been no positive clinical test that definitely diagnoses the disease. On the good days I wonder if I’m just feeling the effects of an older, stress-laden, less-active lifestyle and if a better diet and more excercise wouldn’t have the same effect without the side effects of powerful drugs. What if I’m paying all this money and flooding my system with potentially damaging potions when a swift kick in the behind to get me to the health club is all that’s really necessary.
And then there are the days when I count the minutes until my next Simponi injection.
And every day I count my blessings, my friends, my family, the health I do enjoy (most of the time). Overall I have a wonderful life . One of these days, my life may center around my disease. But that day is not today.
Aww, thanks for the concern when I’m late with my posts. I’ve been pretty off for the past two weeks, which as you know is a reflection of how my mornings have been going.
I agree with you in terms of not feeling alone. I was alone up until less than half a year ago – had never spoken or written to another person who was living with RA. It still presents its challenges – RA that is – but knowing there is a community out there sharing our experiences has been priceless.
I also have the sero-negative form of RA and I often wonder the same things. Yes, it is nice to know that there are other people out there that know what we are going through and that we can talk to. Sometimes I feel so alone and feel like I have no one to talk to about the RA and how bad I hurt and how much I want my life back.Before I had RA(2 years ago) I weighed 110 pounds now I weigh 172 pounds and I hate it. I’ve tired to lose weight and just can’t. I don’t know maybe its because every time I turn around I’m taking prednizone because I hurt so bad and people tell me that that can cause you to gain weight. Do you have any ideas about this?
Pamela: First of all, you’re not alone. There’s a whole community of us out there that shares your pain and struggles to get through every day. There is also a lot of joy when you do find answers and when you do make progress, so please don’t give up hope. To answer your question, yes, prednisone can definitely put on the weight. It does a lot of good, but it does have it side effects. I have a love/hate relationship with it as well. Do the best you can. Every day. And feel free to check in here if you ever feel you’re alone, because you’re not.
Carla I would like to know if you are in pain every day and if so what you take for the pain.The doctors make me feel like I shouldn’t be in pain every day and that it shouldn’t be bad enough that I would have to take any thing for the pain. They make me feel like it is all in my head. I don’t want to be in pain. Before I got this I wasn’t in pain all the time. I am tired of being in pain and not being able to do the things I used to do.