I have been thinking this week a lot about what I know about RA. Honestly it probably isn't a lot, and again honestly it doesn't bother me that much. I "know" a lot of people who are on a mission to figure out what causes RA or answer the question why me? To be honest I just don't care anymore. In the end it doesn't really matter what caused my RA or why I got it. What does matter is how I decide to live with and treat my disease.
Things I do know about MY RA, cause lets face it, it is different for all of us.
1.) No one else in my family that I know of has or had RA.
2.) I was very young, "too young" to have RA and no one believed that there was anything wrong with me including my family. In fact my father would get so mad at me for not being able to do things that he would say "your just allergic to work" Of course this is because he wanted me to take golf carts and cars apart on my own with very little to no help. I haven't been able to kneel since I was in my early 20's and getting up and down was quite hard. Not to mention that when my RA came on I lost the strength in my hands very quickly.
3.) I have very hard to control RA. I have been on several medications and only 1, yes 1, has totally controlled my RA and halted the progression of it. That medication I proved allergic to and was only allowed 2 months of freedom from my RA.
4.) I have found no foods that have any affect, either positive or negative on my RA.
5.) This one annoys me, I did not, have not, seem to not be able to take weight off despite my RA.
6.) I have learned over the years when I am going to "Flare". Sometimes I can even tell ahead of time if it is going to be a "BIG" flare or a "little" flare.
7.) Like most people I can't seem to pace myself when I am having a few good days.
8.) None of the above matters, because things change so quickly.
In my early 20's I had six months where I was pretty much bed bound. I don't remember much from those months except the pain. I remember one days taking a bath and passing out from the pain. I dealt with that alone because my health and my pain were mine alone. No one else cared that was a part of my life at the time. In fact until I turned 27 and met my husband I carried the weight of my problems on my own. Yes I had family but they had other concerns. Won't go there cause I would sound pretty bitter, and truthfully I probably am bitter.
I may not "want" to know why me or what caused my RA, but I do want to know about the things I put into my body. So when I am told, "We are going to put you on a new medicine." I demand to know what the choices are and I make the decision about what I am going to put into my body. I do the research and I learn what I need to learn.
Why, well Why not???
I guess what I am really trying to say is that we all have our own way of dealing with out disease, and the process it takes in our bodies. I see so many people who have decided that there way is the BEST, or ONLY way that this disease SHOULD be dealt with. That is so wrong... What works for one of us may or may not work for another one of us. We are all dealing with the same but very different disease. Why should we push things onto others?
Ultimately I don't know much about, RA, but who does. Why does it matter what caused it? Why does it matter, Why Me?
I don't think it does matter but that is just me. I don't like hearing how people think I am wrong because I am putting horrible, terrible, poisons into my body. You know what? My disease may not be in remission, my disease may never be in remission, but at the moment I can walk without my cane (walking stick). I can cuddle my kids without too much pain. I can live a life that I want. I can do that because of the medications I put into my body, and for me the side effects were in no way worse than the disease itself. I understand that for some people they are. When I was on Enbrel I was hit with the worse migraines I could ever imagine. A few weeks in I was ready to call my Rheumy and say I just can't take the side effects of this drug. Not everyone gets that with Enbrel but I did. Not everyone has hallucinations with Methotrexate but I do. So am I wrong to take it. Well shouldn't I be the only one to make that decision?
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