It has been a while since I have been here to write. Thank you to my loyal readers and supporters for checking in. Three weeks ago, I started with the infusions. The day I had my first one, I was in rough shape and expected far too much of myself and the new treatment. It wiped me out for DAYS! I can't say that I noticed much. Initially, I thought my hands were feeling better, but that quickly fleeted. My second infusion was last week and I was told that it could take a couple of months :0(. Onward and upward. I am still better than 2 (almost 3) years ago and as of a year ago, this pain has a name. Two, actually. And I think I have found a good fit with my new rheumatologist. I'm in a good place, considering.
We live and we learn. I live and love with daily chronic pain. I push myself to limits I have learned not to expect of others. There will always be those who wont try or want to understand my limitations (which are exceptionally high as I expect more from myself...to keep myself from expecting any less!). It is not up to them to set my limits for me. I got that. From now on, I totally got that. I can no longer wait for others to recognize where my limits are simply because I tell myself that if they think I can, then I should.
This blog started with an epiphany. It is the one constant in almost every post. This is my voice, my art and my very exposed heart. What is the epiphany this time? When the doctor says, "it is too much. You need to rest. Without rest, [recovery and gains] will be lost.", it means...REST! Nobody can do it for me. Maybe it is about time I start acting like I feel...sick. For just a bit. Only a bit. I owe this to myself, to my husband and to my children. I am not giving in to it. I am not failing. I am not weak. I am simply doing what anybody with the flu (which is the best, simple, example I can give to this) would do. Recover and get stronger. I got my fight on. LOL! My body ALWAYS has it's fight on!! Damn conflicted immune system.
I am three weeks out from the next infusion. I will be spending the time up until and maybe some past, doing what I want to do. I have so much to be thankful for. I have my husband, children friends and family who faithfully have my back. Fingers willing, I will be back here more often. Know that I read and appreciate EVERY comment and email even if there is no response. They are all very important and inspiring and I don't want to place a value of one over another, so if I can't respond to all, I won't at all. I know you understand and thank you for that as well.
Stay well, strong and full of faith!
Rachel, good to see your post. Just stay the course, it's all you can do. I have a theory of time/relationship/avoidance of pain or flare.
ReplyDeleteif i'm on my feet for 2 hours, I take off four. If I miss sleep the night before, I take a nap in the daytime. I no longer feel guilty but much of that credit is not mine. I have a very loving husband who knows what is best for me is to care for me first then all others.
right now i'm in a scary fight with a severe allergic reaction to a an injectable. I'm not out of the woods but I am being carefully taken care of by all. All I can do is get up & hope tomorrow will go better. God willing, it will.
Hugs
Ugh. I am so sorry to hear that you are beyond not well. Which injectable are you reacting to? I will keep you in my prayers. I am glad to know that you have help (we have that in common. I have a wonderful husband as well). Please keep me posted on how you are progressing. You will be in my thoughts. Thank you & rest...
ReplyDeleteGentle Hugs to you
I understand, sometimes you need to take that time to rest. I work a lot (average is 50 hours a week, sometimes more). It suddenly occurred to me last week that maybe I wouldn't be so tired & hungry if I stopped working on weekends (I'm only paid for a 40-hour week). Sometimes you have to take care of yourself!
ReplyDelete