Sorry I haven't been very good about updates lately, but I have returned to life as usual...which is busy! It is amazing how much more time you have away from home with 2 to 3 extra people helping you with everyday tasks...THANKS to Gaga, Susu and my precious hubby for all the help. I LOVE YOU!
Well, so back in Fayetteville...I am trying to get my days under control. I have run into many of you at schools, church, grocery, etc and you have asked how I am doing. I am doing...not so great, but I still have GREAT expectations. I knew this was going to be a long road and although I want immediate results they are not coming. I think that the hardest thing for me is what I like to call the "unknown" factor. To be quite honest (like I don't do that already), I don't now when this ALA is going to kick in, and it is that "unknown" that makes my days hard. I long for the day that I can wake up and have a spring in my step instead of a limp. Today was an especially bad day, and I think it is because I am trying to "get back in the swing" of things here at home and my body is trying to remember what that is like.
Like I have said before...I KNOW THIS IS GOING TO WORK! The prednisone is slowing the process (down to 17mgs). I have had concerns about how my body would react to coming off the prednisone this quickly without the daily infusions, and I think my fears are being realized. My last infusion was on Sunday and I am not feeling as good today as then. I was going to wait for 2 weeks to get my next infusion, but we are going to move that up to this weekend. Dr. Berkson suggested more frequent infusions here at the beginning, so I probably need to follow the Doctor's orders.
So....I have decided to be optimistic and make a list of a few things that I look forward to when I kick this RA in the rear:
1) wearing my wedding ring again...i just love what it stands for
2)I have promised my kids I am going to buy a bike to ride with them (they are too fast for me on foot)
3) Turning a doorknob without hesitation or anticipation of pain
4) Putting on my own tennis shoes.
5) losing 20lbs of prednisone weight
6) wearing my watch (I have put 4 links in it and how now given up)
7) sleeping in another position then flat on my back and sleeping through the night
8) walking barefoot (can I get an AMEN Liz?)
9) picking up my sweet baby when he says "carry me, mommy"
10) Giving God the Glory for my healing in His perfect time through this ALA/LDN
My posts will be less frequent, but I will update as needed! Thanks for continuing to pray and may God reveal His timing in His perfect way and that I can be open to learning every day from this process....
Yes, dearest. AMEN! Amen amen amen amen. I've been totally present for #'s 1, 3, 4 (might add the sock factor - that took at least 10 minutes), 6, 7, 8 & 10. I can't use pred as an excuse for my weight. I just like food too much!
ReplyDeleteBe as patient as you can, consider ordering some LDN from McGuff. Get as many ALAs as you cn and keep the faith. It's going to astound you and there will come a time that all the pain is just an unpleasant memory, and your gratitude for the small things will consume you!