Wednesday, July 20, 2011

frustRAtion

Hello everyone!  Sorry about that...two weeks is a pretty long between-posts hiatus.
It's been a fun two weeks though!  My cousin Gina and her three came in for a couple of days, and we had a blast.  Then the next week, my cousin Carol and her husband Calley and their two boys came in for 5 days!  We had such a good time with them.  Bryan took them on a tour of NASA, we hit the neighborhood swimming pool (it has slides!), made a day trip down to the beach, saw Rio at the dollar theater (GREAT movie!) and caught an Astros game!  The Astros lost (of course), but the fireworks show after the game was excellent.

This week is the first week this month where we don't have someone coming to stay with us!  July has been, and will continue to be, quite the busy month!

***Warning: What follows is a vent.  I know I'm normally upbeat about the whole RA thing, but today I'm having trouble kicking my perspective back into gear.  So, I'm writing.  Feel free to stop reading here :-)***

I really wish that was all there was to this month--people coming in, getting to spend time with family.  However, I'm apparently caught in the flare that never ends.  I keep calling it a "flare" because the only other term that would really apply is "regression" and I HATE that word.  Regardless of its 10 letter composition, it's still a four letter word in my book.

My right wrist is pretty bad off.  Once again this morning I can barely see my wrist bone through the swelling.  Of course, that means that my entire right hand was feeling left out and decided to join the party.  For some reason, my feet decided to join in as well, especially my left one.  With my left one this flared, I distribute my weight differently on my foot, which means that this morning my left knee decided to start complaining.

Other than the knee, all of this has been going on for a FREAKING MONTH.  Which means I haven't been taking walks, and haven't been going to water aerobics.  Hurting and being stuck in the house in a pretty big bummer, so I haven't really been doing the Weight Watchers (hello, my name is Kristen and I am an emotional/bored eater), which means I've gained some of my weight back.  Which makes me feel wonderful, let me tell you.

On top of that, a friend of mine just got diagnosed with RA two months ago and calls me to vent and for advice.  I don't mind that at all--I'm glad that my experiences can benefit someone else.  

HOWEVER, she has a crappy doctor  and won't change because she doesn't want to hurt said doctor's feelings, AND she's gotten it in her head that her disease symptoms are only appearing because she now knows she has RA PLUS she randomly decides that her pain and swelling is the fault of her medications and STOPS TAKING HER DRUGS.  

First of all, RA is a progressive disease.  Once it shows up, it's here to stay and it WILL GET WORSE.  Second of all, SCREW hurt feelings--you need a good doctor with something like this.  Thirdly, she needs to give her meds time to work, get new ones if they don't, and realize there is NO CURE so the meds aren't going to "fix" everything.  Finally, if the meds were causing the symptoms I'd be happy as a lark because I'm off of everything.  The frustrating thing is, no matter how many times (and it's been a lot) that I tell her all this, a week later, I'm getting the same spiel.  I hate seeing a friend get diagnosed, but even more I hate seeing her NOT LISTEN and make decisions that are going to hurt her long-term prognosis.  Hopefully, her case won't turn out to be as extreme as mine, and these stupid decisions won't completely screw her prognosis.

On top of all of that, today I'm hurting particularly badly (see above about my knee), so I'm having to sit.  
On the couch.  
All damn day.
When I have plenty I need to get done before this weekend.

Oh, and did I mention I'm still not pregnant?  And that I go to see Dr. C (my rheumatologist) next Thursday?
I was really hoping to be pregnant by the time I saw him again.  Granted, once you figure in the time for going off of my meds and then the time for everything to regulate after going off of the pill, we've only really been trying for 4 months, but I was really hoping.  

Barring that wonderful event, I REALLY did NOT want to go see him as flared up as I am right now.  All that will do is open the door up to the Fertility Options OR Back on Your Meds discussion that I really want to avoid.  So, I'm going to be a good little gimp girl for the next week and hope that all of this settles down sufficiently so that Dr. C is fine and dandy with giving us a bit more time to try on our own.

Now that I've gotten out everything that is frustRAting me at the moment, here's what I'm thankful for:
Having the ability to be on disability...
Victoria might be coming to stay next week...
We're having dinner with Mark and Alicia tonight...
 It rained yesterday and looks like it will again today...
I get to see more of my awesome family this weekend...
and most of all...
I have an amazing and wonderfully supportive husband who loves me and whom I love with all my heart!

2 comments:

  1. Hi there Kristen-

    Just found your blog and read your intro and a few posts. Agree that life is amazing!! Just wanted to say hello and wish you well with getting pregnant and your pregnancy. I missed the posts where you must have told about going off your meds. I know someone else in a similar situation and just wondered if that went smoothly for you. Also, are you taking any kind of all-natural supplements to help with your RA since you are off meds? I am thinking you wouldn't want synthetics since you would want to stay away from chemicals. If you could point me to the post where you talked about getting off meds.. that would be great.

    Again, all the best to you! Take care:)

    Vicki

    ReplyDelete
    Replies
    1. Hi Vicki! Thanks for stopping by lol. Sorry about the delay in getting back to you! I didn't really do a post focused on going off of my meds...I just stopped taking all of them in November of 2010. I did ok until they were all out of my system (about 3 months after that) and then started flaring again. I got back on prednisone (which is completely metabolized by the placenta) shortly after that to help control the flares because it's the only effective RA drug that is completely safe during pregnancy. It took us quite awhile to get pregnant, so it's basically just been sucking it up and dealing with it since then. No, I haven't been on any supplements--all natural or otherwise--mostly because there is not enough research on the effects of any supplements on the baby during pregnancy to make me feel ok about taking them. Even so-called "all natural" supplements can have ingredients that offer potential harm to a developing fetus, so I stuck with what I knew never got to the baby. I hope this helps and wish your friend luck in her journey to parenthood!!

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