Monday, April 21, 2014


Well, my Remicade is crapping out on me.  It has been slowly losing effectiveness for several months now; however, within the past two months, that process has started to accelerate.  My rheumy let me know that we should start looking at other options back in October, but I just couldn't let go of the hope the it was just a lull in effectiveness.  January and February disabused me of that hope, and March and April have only clarified the need to try something else.  After looking at the options my doctor presented, I'm about to start Actemra this week, provided that all the insurance stuff goes smoothly.  It's an IV infusion, like the Remicade, only much shorter, lasting one hour instead of 3.  It also targets a different part of the immune response (IL-6), and so, hopefully, will have a good chance at succeeding where Remicade has failed.  So, it looks like I will be starting my 4th "big boy" drug--methotrexate, Enbrel, Remicade, and now Actemra.  

I'm scared.  And feel silly for being scared.  It's not like this is my first drug switch, or even my first IV or biologic medication.  The side effects are basically the same as Remicade, with a few new rare ones thrown in, just to keep things interesting.  I seem to be an ideal candidate for success, according to both my independent research and my doctor's opinion.  I guess it's just that whole "fear of the unknown" thing, combined with the fear of failure.  I'm tired of drugs ceasing to work, and it scares the hell out of me that my body seems to burn through them much faster than normal.  Enbrel was supposed to be effective for 5 years--I burned out in 2.5.  People stay on Remicade for 10+ years--I'm switching after a total of less than 4.  Granted, that might be due to going off of it for the pregnancy and then trying to restart it again, so, my bad, I guess lol.  Not something I regret even a little bit, even now that I'm facing another switch.  I would just really like Actemra to work, work well, and work for awhile...and so I'm scared it won't.

The good news is if, worse case, Actemra doesn't work, or stops working, we still have a couple of other options on the table, and more options are being developed on a yearly basis.  Hopefully, the speed of medical advancement will surpass the rate at which my body adjusts to the current drugs.  At some point, I'll probably have to become a guinea pig, so to speak, but I keep holding out hope that day is pretty far in the future.  Kind of like the possibility of ending up in a wheel chair or the reality of a future elbow replacement surgery--I'm planning on putting that shit off as long as possible.  After all, what am I, if not the queen of procrastination? ;-)

Anywho, on the upside, going on Actemra means there's a high likelihood that I will be able to STOP methotrexate all together, and seeing as I wanted off that med even before I started taking it, that's enough of a bright spot to help dispel the encroaching gloom of another failed drug.  So, hooray for Actemra!  Here's hoping you prove my fears to be unfounded, and my particular pain-in-the-ass case of RA to be no match for your medical might!  

And so, my journey with RA continues.  Time to take the next step, and start making phone calls to ensure the bureaucratic paperwork part goes smoothly.  Wish me luck!

Friday, April 18, 2014

Expanding My Craftiness

Exciting news!  I'm not as completely hopeless at making things as I've always believed myself to be!   Lol, seriously though, I'm starting to learn another craft, in addition to knitting.  While knitting is my first love, and I'm definitely keeping busy turning yarn into finished products, I have found another crafting love.  My amazing husband knocked it out of the park with his Christmas 2013 gift to me--a shiny new sewing machine and a class to go along with it!  The class was taught at the local yarn shop by one of my friends, and by the end of it, I had successfully completely a placemat!  Since then, I have also made a lined drawstring toddler backpack for my nephew's first birthday, and helped my friend Julie show a quilt top!  I have a few other things I want to make too, and I'm very excited to have added another craft to my hobby list!  The only downside is that sewing is shaping up to be just as addictive of a hobby as knitting is...I stayed up until 4:30am working on the backpack without realizing it!  While I can definitely stand a little sleep deprivation for the sake of the craft, my wallet just sighs--fabric and yarn are definitely going to eat any discretionary funds I can squeeze out of my budget!  Anyway, here couple of pictures of the drawstring backpack I made!


Upcoming Knitting Projects:
MORE baby hats lol
A couple of shawls
Finishing a couple of almost-done and just-started projects
A slouchy hat

Upcoming Sewing Projects:
A drawstring backpack for Caylee
A stuffed dino for Caylee
Possibly starting my first quilt!

Wednesday, April 16, 2014

Where in the World Does The Time Go?

Hello to anyone out there reading this!  I can' believe my last post was in September, and here we are in April already...and I promised myself I would do a better job at keeping this blog updated!  Oh well, nothing to do but try again, I suppose.

Let's see...I guess I'll start with October.  HI made Caylee's costume this year--she was a zebra!  Unfortunately, we were all sick on Halloween itself, so I just let her run around the house in her costume lol.  November brought the birth of my cousin's second kiddo, a beautiful little girl we'll call R.  That same month, however, also brought the hospitalization of my Papa.  We stayed in town for Thanksgiving, and family came in for Christmas.  Bryan's birthday was a lot of fun--dinner and a movie with some friends.  Papa's surgeries all seemed to go well, and we even got to visit him Christmas Eve with all of my dad's side of the family, minus some of my cousins who were out of state.  New Year's was a pretty laid back affair, and 2014 got started.  We all got sick again, which seemed to be a pattern--Oct, Dec, Jan, and Feb too.  My birthday came and went--dinner with lots of fun folks and realizing that I'm only a year away from 30 lol.  We all hoped that Papa's recovery would continue making progress; however, it did not--he continued to have major set backs, and he finally came to the end of his journey with us.  He passed in the beginning of February; however, Bryan and I and the baby all had a stomach flu the week of the funeral and didn't get to go.  That was very difficult for me, to not be with my family to say our last goodbyes, but at the same time, I know that Papa was already gone, and I like to believe he and my Dee Dee are keeping an eye on those of us still here.  Before I knew it, it was suddenly March.  Caylee and I went to Fredericksburg with my parents to visit my Gan Gan for a week, and had a wonderful time seeing family and enjoying being in the Hill Country.  Now, it's April--well, that got us caught back up fairly quickly!

Caylee is 20 months old today, which I can scarcely believe.  She knows how to count 1-10, can say all of her ABCs, knows how to spell her name verbally, speaks in sentences and phrases, has several books mostly memorized, and doesn't stop moving until she's asleep lol.  She's not quite ready for potty training yet, but I think it won't be much longer before she is--at the very least, she's getting to where she enjoys sitting on the training potty we bought her to read books lol!  Bryan and I are extremely proud of her and constantly amazed at how quickly she learns and grows!  Speaking of proud, I'm sure proud of my hubby as well--he is now working on his Masters degree while working full time and taking care of us!  He's pretty much fantastic :-).  Anyway, that completes the family catch up for now!


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