Falling Back & Pushing Forward

RA is no joke.  I am about a week away from being reminded of just how funny it never has been.  It's not the pain that breaks me..it's the quality of my hours, days, sleep, play and brain that does.  I have been without an infusion since June 4th.  I just got the go ahead to start them again.  Except I cannot because I am having surgery soon.  I decided to eek it out until after.  I have to wait until mid November to have the next infusion.  On top of that, for the next 3 weeks, they are taking me off the methotrexate.  This rattles me a bit.  I missed my weekly dose, once.  That is all it took.  One time and I never missed it again.  It is that bad.  I would be lying if I said I wasn't terrified of what most likely is about to happen.  A lot of people don't know or understand how bad RA can feel or be.  A lot do.  I really am not ready to fall that far backwards.

There have been no posts here because my hands and fingers ache.  Otherwise, I have been doing well.  Our summer went by too quickly, but was packed with a lot of happenings.  August was a blur of stressful events.  I am thankful for family and friends that were there for us.  Checking in, popping by and calling.  All at what seemed to be perfect moments where I gladly welcomed the distraction from all that was happening.

September came and it was time for school.  The time of year I dread the most because I have to give up my babies for a good part of too many days per week.  We decided to take some family time and extend our annual camping trip with my sisters and their families (aka Sister~Fest!).  We went a few days ahead and enjoyed some kayaking, beach days and a trip to Gettysburg.  It was wonderful.  My sisters and their crews showed up for their usual days and we all enjoyed the best Sister~Fest yet!

October is going to be a blur as well.  The next couple weeks are filled with doctor appointments, tests and ultimately, the surgery.  I don't care if someone minimizes the procedure, but what I can't tolerate is how all this makes me feel being minimized.  I just want to get to the other side of October 15th.  To know that I made it. Alive (oh yeah... I have had many surgeries in the past.  This is the first time I have thought, "what if I don't make it?").  I have reason, above the typical risks, to worry about this. To know that it's done.  No more fantasy of my body suddenly being healthy enough for "one more".  Remove the option so I can move on. Not only am I looking forward to healing from the actual surgery, but I am looking to heal altogether.  Get this done so I can resume treatment for RA, etc.  Get this done so I can start to process the end of something I wasn't ready to be ended (last week I went through a flurry of purging the attic and house of baby items.  All except the crib and changing table.  I couldn't bring myself to let go.).  I want to move on.  Forward. And for the love of God!  I would like to have a shot at a healthy Thanksgiving and Christmas...for the first time in FOUR years!!

This is where I am at.  This is where I have been.  I have not been ignoring or avoiding anybody.  I have just been busy trying to keep up with life. I appreciate the concern and you stopping by here and it means a lot that so many take the time to check in.  It truly does.

I am hoping to pick up this blog where it originated (a weight loss journey) when I am recovered.  Somehow, despite all the steroids, I have dipped well below the weight that started this journey.  I haven't researched it yet, but I wonder how much a uterus weighs?  Can I count it as an official loss?  I am hoping that it weighs somewhere in the neighborhood of 100 pounds.  What do ya think?

A Time to Rest

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!

Hanging in There

I just wanted to wish everyone a (belated) Merry Christmas.  I also wanted to acknowledge the comments and e-mails I have received from several of you.  Thank you and I will respond shortly.  Currently, things are a bit rough and to type this is quite the painful chore.  I over-did it for Christmas festivities.  In addition, I have been taken off the Humira injections in preparation for the infusions that are to start January 6th...ugh.  That is a long time away in RA land.  But, I am doing fine and taking it slow and easy.  I am very much looking forward to the infusion.  I hear that I may actually feel a difference THAT DAY.  The only time I ever felt instant relief was when I was put on a good dose of steroids for the first time.

Your comments and e-mails always mean so much.  To be able to reach out and have you all reach out to me is beyond comforting.  Thank you so much for your continued support.  I wish all of you the moments of relief we all hope for.  I will be back soon!  Until then, be kind to yourselves.

Rachel