JOINTogether

The Latest!

noreply@blogger.com (Gabriele) — Mon, 05 Oct 2009 20:22:00 +0000

So it has been a super long time since I have updated everyone, and considering I had a reader comment that we should blog more often, here is my attempt. Now that is not to say that I will keep up with it by any means, it is just a start.

So, overall I have been doing wonderful! My joints have been feeling great most days and the weather changes are not even as bad as they have been. My medication is working wonders!! My only problem has been my stomach, it does not matter what I eat, when I eat, etc., it hates me. Everything you can think of is happening in my stomach/intestine area...so I went back to my PCP last week to figure it out. Granted this has been happening for about six months or so, but when you have to quickly leave meetings it is no longer just an annoyance it is a problem.

My research person suggested that it maybe the Methotrexate that is ripping up my stomach and intestines but that I should check with my PCP to make sure it is not something else. So, my PCP agrees that it is probably the Methotrexate considering it happens ALL the time and not just randomly or because of a particular food. His suggestion is that I not take it for a week or two and then get on the injections of Methotrexate instead of the pills...great, now I have to give myself a shot? Or should I say, my husband will have to give me a shot? Maybe eventually I can do it myself, but in the beginning, dream on. I'll update once the shots begin...should be interesting!

On another note, considering how well my RA is doing and the wonders of medicine, I am able to do things I used to, such as dance, or something like that (I was a ballet dancer, not a hip-hop or anything else dancer, so don't judge). So, this past weekend my husband was the fortunate winner of a Toyota Tundra Tailgate Challenge. This means that we were able to drive a 2010 Toyota Tundra around for the weekend with the possibility of winning the truck for two years if we made a winning video of us tailgating with the Tundra. We decided that we needed to get creative in our video and considering all the local teams were either on a bye week or at an away game, we had to be even more creative. Thus, we made this: http://www.youtube.com/watch?v=bm_NY3oH3Is . Check it out, it is hilarious if nothing else! Good times!

OKC Arthritis Walk | May 30th

andymooreworldwide@gmail.com (Andy) — Sun, 26 Apr 2009 23:09:00 +0000

Hey everyone, the 2009 OKC Arthritis Walk is coming up! Please come join our team as we raise money and walk in support of arthritis research, treatment, and education. Last year we did the walk in College Station and it was encouraging and a lot of fun, and we are both looking forward to this year!

Some quick event details:

When: Saturday, May 30th, 2009 (Time TBA. It will probably be in the morning, though.)

Where: Stars & Stripes Park, Oklahoma City (link goes to Google Map)

What: Choose from a 1- or 3-mile walk route and enjoy the food, fun, and festivities!

Sweet, I wanna walk with you guys! How do I sign up? Go to ourteam page and join our team!

I live out of town but want to come in for the Walk. Where should I stay? Very exciting! Well, we have room in our apartment for a couple of folks, and there are several hotels near the park, as well as others near our apartment.

Aw shucks, I can't make it this year. Can I still donate to your team? Of course! You can go to our team page and donate thru the secure site, or you can send us money directly and we'll add your name to our donor list. (Yes, it's all tax-deductible.)

I heard that last year your team had some sweet shirts. Where can I get one? We have a CafePress store where you can buy arthritis-related apparel that we've created, and we have new designs being posted all the time. All the proceeds go toward supporting arthritis research, treatment, and education. (If things go really well, maybe we'll even start our own 501(c)3 someday!)

What about your blog? Is that thing still active? Yes, we still have our blog (JOINTogether4RA.blogspot.com ), though we admit that we've been neglecting it the last few months. However, we've made some new friends in Blogger and are experiencing a renewed interest in documenting our journey and experience with RA. Stay tuned for an updated design and new content!

If you have any questions about anything, please don't hesitate to write or call. We are seriously excited about this year's walk and hope you can make it. As people begin to sign up and we begin to get an idea about how many people will be attending, we will send out further emails with any additional info about things such as afterparties, cookouts, etc.

Pictures of Ike (from most recent pics to older pics)

noreply@blogger.com (Gabriele) — Mon, 20 Apr 2009 20:04:00 +0000

My niece Katherine and Ike - 4/4/09 - 17 weeks old - approximately 6.1 pounds

Ike - 3/20/09 - 15 weeks old - approximately 5 pounds

Ike - 3/1/09 -12 weeks old - about 4.5 pounds

Ike - 3/1/09 - 12 weeks old - about 4.5 pounds

Ike - 2/15/09 - 10 weeks old - almost 4 pounds (look how tiny he was...aww)

It is funny to see how much he has changed over the last two months. He has now had all of his shots and is "street legal" according to our vet, which means he can go to the dog park, groomer, and PetsMart. He had his first adventure to the dog park on Saturday and seemed to have had a great time being chased by two other little dogs. He is teething, so his little teeth are sharp and painful. Overall, he is a great little puppy (or polar bear) as I like to call him. He has plenty of energy, but is an excellent sleeper as well. We are pleased to have him and feel as though he is a good match for our little family. :)

Wow, it has been a long time...December, I think.

noreply@blogger.com (Gabriele) — Wed, 15 Apr 2009 19:11:00 +0000

Sorry for the absence, not sure why I have not posted in several months. Honestly I think I got bored and felt as though I had nothing to write. I have been keeping up with friends blogs but let ours go to waste. Anyway, here is a little update on things in our world. Obviously we moved back to Oklahoma in November and although we miss our friends and family down there we are happy to be home.

Andy is currently working for a counseling clinic in downtown OKC and also with me at the church medical clinic where I was before we moved. I am working at the church doing individual counseling mostly for children, adolescents, and 20 somethings. I am also working at the children's hospital that I worked at for my internship back in the day doing counseling for the children there with major medical issues and acute trauma such as car accidents, house fires, etc. I am so excited to be back there, it has been my dream that the day would come when they needed me, and it has finally come!

We recently got a little puppy named Ike, he is a malti-poo (man, I feel like a dork when I say that). He was named after Hurricane Ike that occurred while we were down in Texas. He got his name because he was "hunkered down," yes my friends, hunkered down. This is what the news people in Texas kept telling everyone to do during the Hurricane and we thought it was hilarious, so when we saw Ike for the first time he was the only puppy lying down and all the others were running circles around him...it was just a perfect hunker down so we had to name him after that. He is adorable and is about four months old now. He looks just like a mini polar bear and although he is teething, he is just too cute!

So, over all things are going great for the Moore's! We are loving life and doing really well. My health is doing much better and continues to improve each month. I feel as though life is much easier when I am able to wash my own hair and go to the bathroom on my own...it's like I am my own person again, YAY!!! My infusions are still every four weeks and they are working wonders. I am still taking the Methotrexate every Saturday night and it still makes me feel like I have the flu but I am barly taking my pain medication and have cut it in half again, which is truly exciting in my world.

Anyway, I think that is about as short and concise as I can get in a little blog post. Hope this finds everyone doing well and healthy!

Yuck!

noreply@blogger.com (Gabriele) — Wed, 10 Dec 2008 19:37:00 +0000

Here's what I look like when I hurt, which has been frequent and intense lately with all the weather changes. Next infusion is on Monday though, so hopefully that will help!

thanksgiving

andymooreworldwide@gmail.com (Andy) — Fri, 28 Nov 2008 03:04:00 +0000

quick update, since we haven't written a "real" post since september: as many of you know, we recently moved back to oklahoma city and are settling back into our routines here. we've both been blessed with wonderful career opportunities, and we are happy to be home. we'll try to post some moving pics soon.

today is thanksgiving day, and now that our tummies are full of food and our hearts warmed by watching miracle on 34th street, we thought it would be a very nice chance to get back into the swing of blogging by telling what we are each thankful for this year.

andy: "i have felt so blessed this entire year, it's hard to know where to start. during our recent move, i was reminded of all the little things i'm thankful for - our home, our car, our stuff, and our friends and family. on that note, i am especially thankful for the quality of relationships i have with my friends and family, for the effort everyone gives to show love to one another. i am thankful beyond words for my relationship with gabriele, for our wedding in july, and for the many experiences we have shared. i am also thankful for her love, kindness, and patience with me when my efforts to help miss the mark. in many respects, i owe a huge amount of thanks to the many medical professionals that have guided us throughout our journey with RA, and for the folks at roche for developing the medication that has helped gabriele so much this year."

gabriele: "let's see, i am thankful for so many things, it is hard to think of them all. first of all, i am immensely thankful for my wonderful husband, for blessing me with such amazing love day after day, for marrying me, for taking care of me all the time, and for showing me beauty in each day. i am thankful for all of our friends and family and for all of the fun times that we get to have with them and for the love they show us. also, i am thankful for my medical "team" and for all of the ways that they take care of me, for supporting me and assuring me when i think it will never get better. i am thankful for technology, science, and creativity in the interest and development of medications for RA and for the response in creating awareness for such a debilitating disease. and, of course i am most thankful for God's fulfilling love and encouragement in both the good and the bad."

hope you all have had a happy thanksgiving and feel as blessed as we do!

hands-free

andymooreworldwide@gmail.com (Andy) — Wed, 19 Nov 2008 21:10:00 +0000

admittedly, many will find this post to be a disappointment after us being absent for several weeks. i assure you that there is better stuff to come.

until then, does anyone know where we can get macspeech dictate for cheap? it retails for $199, and the lowest i've seen is $120 on ebay. gabriele is an avid mac user, and options for voice-recognition software are quite limited for users of the fruit. since she's doing counseling again, she has to type a lot of process notes, and doing so is a real drain on her already weary hands.

impressions from our first arthritis walk

andymooreworldwide@gmail.com (Andy) — Mon, 06 Oct 2008 00:12:00 +0000

gabs and i had a wonderful time at the bryan/college station arthritis walk yesterday. we had 18 people (including 4 cute lil kids) on our team - a showing that was incredibly humbling and heart-warming. a tremendous thank-you goes out to all of you who got up early on a saturday morning to come wander around a park with us. our shirts were a big hit, too, and we had several people ask where they could get one. perhaps some of them are reading this right now...

for me, it was helpful to get to meet and interact with so many other people who have day-to-day experiences similar to what goes on in our household - stiffness in the morning, pain throughout the day, swollen joints, unwanted side effects from all the medication. one woman, mary, told us that taking prednisone for years has caused her to develop medication-induced osteoporosis. we also met the walk honoree, a 4-year old named zoe, who has juvenile rheumatoid arthritis.

we also enjoyed getting to meet and chat with the helpful folks from the arthritis foundation and the aggies and arthritis club at texas a&m. many of them we knew by name from websites and emails, but i always enjoy getting to put a face with a name. even some of their moms came by to say hi!

it was also encouraging to see so many smiling happy people. i've been to similar events that felt depressing and hopeless...this was definitely not like that. now, it could have just been the free food from freebirds and cold stone, or maybe the moon-bounce and bungee-run, but i'm willing to bet it was really because the 150-ish walkers had raised over $14,000 to support arthritis prevention, research, and treatment.

after the walk (and naptime!), several of our teammates came over to our place for a cookout and a chance to just hang out and watch football. today has primarily been recovery time, both from the festivities yesterday and, for gabs, the usual flu-like effects of methotrexate.

thanks again to everyone who sponsored, organized, volunteered, donated, and attended the arthritis walk, both on our team and in general. it was a great first experience, and we both look forward to making this an annual event.

busy times at JOINTogether...

andymooreworldwide@gmail.com (Andy) — Wed, 01 Oct 2008 00:00:00 +0000

two important tidbits of info today:

the bryan/college station arthritis walk is just a few days away! as of this moment, our team has 12 people signed up and have raised $250! incredible! i may be biased, but i think we have the best friends and family in the world, bar none. (also, we got our JOINTogether t-shirts today!)
we have been asked to be featured Health Bloggers on a new healthcare website, wellsphere. we are honored and excited at this opportunity and hope that this will help us reach a broader audience as we strive to raise awareness about RA and arthritis in general. if this doesn't work, we'll just hire a college kid to stand on the corner and wear a full-body sign.

hope to see many of you at the walk on saturday! if we haven't formally met, please feel free to come up and say howdy (we'll be in college station, after all).

So, for the post that I intended to write last week...

noreply@blogger.com (Gabriele) — Tue, 30 Sep 2008 13:28:00 +0000

My infusion went great last Monday!! The time before that as you know was a train wreck, but this time all was smooth again. They had a new infusion nurse, who at first I was a little skeptical of that ended up doing a fine job and only stabbed me once. I also had an appointment with the rheumatologist this time. Normally she will come check on me while getting the infusion as a part of the study, but this was a normal office visit with all the x-rays and everything. I was under the impression that the office visit was going to be first in an effort to safe time, but they did it the other way around...go figure. Even so, we did make it out of there at 1:00pm and considering previous visits that have taken up to seven hours, only four and a half is not too bad.

The results of the visit were that the rheumatologist and myself agreed that the medication is working which is tremendous! She was very impressed and stated that my body has come a long way even in a few months and that she was worried about me before. She stated that she will continue to check on me during the infusions as a part of the study, but that I do not have to have a normal, x-ray, lab work visit for another year!! Thank God, because even with insurance, it can be pricey. Great news huh? I was excited!

So with that, I have been doing much better!! So much better actually! Granted, I want to be clear that I still have pain, morning stiffness, and it sucks, but not quite like it was even three months ago, and for that I am thrilled!! Yay for feeling better!!!

IKE

noreply@blogger.com (Gabriele) — Tue, 16 Sep 2008 13:35:00 +0000

We survived Ike!! Really, Brenham didn't have too much of the storm at all. Of course it rained and our power went out for about four hours, but overall we faired quite well. We did harbor some evacuees...haha, jk...really my Mom and stepdad along with their cute kitty have been staying at our house since Thursday. It is pretty nice, because my Mom keeps cooking, which is exciting!! Yesterday Andy and I came home from work at lunch, and lunch was ready and waiting!!! Thankfully they were able to check out their boat in Kemah on Sunday and their marina is really the only thing that did not have serious damage. Actually their boat did not have any damage at all, and only had about three blades of grass on it! The only other thing about the storm was that Andy and I had to work all weekend due to evacuees who relocated to our facility. We ended up working about three 12 hour shifts throughout the weekend, including from 7pm to 7am...let me just tell you, that sucked!!! Thankfully nothing major happened and we just got to chill out, but of course there was no computer access, so we were bored to death. Other than that, our first official hurricane ended up being okay.

In terms of health and pain, I too faired better than expected. I have been feeling pretty yucky since about last Thursday but through the actual storm when I am usually curled up in bed crying, I was not! It was great to go through a storm and not feel as though death is around the corner! You may think I am exaggerating, but I am not! Anyway, it was a great feeling for me. Throughout the entire month I have been frequently surprised at my ability to do more things and endure more and more. The medication is working wonders and I am thrilled. Looking back at just three months ago, I see major changes. I am not cured, at least not yet, and do continue to have severe pain, but it is at a much different level than previous! Thank you GOD!!!!

Arthritis Walk!!!!

noreply@blogger.com (Gabriele) — Wed, 10 Sep 2008 00:38:00 +0000

Okay, so the time has come to get all you fine folks, friends and family alike, to step up and participate in whatever way possible at the Arthritis Walk taking place in College Station on October 4th! So far our team consists of myself, Andy, Laura, and Diana. Now this is a great start, but we need more!

We are hoping to have a huge group representing JOINTogether at the walk and raise quite a bit for the Arthritis Foundation. If you are in the College Station area, or frankly in Texas, please come walk with us...it would mean the world to me. Andy is creating some awesome Rheumatoid Arthritis T-shirts for the walk available on our on-line store. If you are unable to attend the walk, but you would like to contribute to the Arthritis Foundation, please feel free, and know that it is greatly appreciated.

Thank you all so much for the amazing encouragement, support, and love that you have given to me through this journey, I could not have made it this far without your help! If you would like more information on our journey with Rheumatoid Arthritis please check out our blog at jointogether4ra.blogspot.com

Thank you greatly,
Gabriele and Andy Moore

Thankful for my RA friends!

noreply@blogger.com (Gabriele) — Tue, 09 Sep 2008 20:11:00 +0000

Just wanted to say thanks to my new blogging friends (links are on the right) for all of the support, encouragement, and for sharing your stories to help inspire me. You are truly a blessing, and you may even be thousands of miles away and we have never met face to face, but it means the world. I look forward each day to logging on and seeing what new blog is up, and being blessed by hearing the successes and struggles that all of you are dealing with. Now granted, I wish that none of us had a blog about Rheumatoid Arthritis because I wish we all did not have it, but sadly that is not the case. So instead of wishing away RA and drowning in my own missery, I am thankful to have friends out there to not only share my story with, but to be blessed in hearing your stories too. So thank you my RA friends, you are an inspiration to me!

invisible illness

andymooreworldwide@gmail.com (Andy) — Mon, 08 Sep 2008 14:00:00 +0000

this week is invisible illness awareness week, a category in which RA is definitely included, but the definition is considerably broader, including physical and mental illnesses alike.

one the really cool things is that they are having a conference that is both free and does not require you to physically attend. since many of the people for whom this conference is organized cannot travel for one reason or another, they have structured the seminars so that you can watch/listen online and participate by phone and/or online chat. also, in case you can't be on the website at the scheduled time, the seminars will also be available for free download the following week (and you can even order a CD copy of all the conferences as well). seriously, how cool is that?

also, be on the lookout in the next few days for updates on a exciting event coming soon!

Schlitterbahn goodness!

noreply@blogger.com (Gabriele) — Sun, 07 Sep 2008 22:42:00 +0000

So yesterday, Andy and I, along Laura and Diana went to Schlitterbahn in New Braunfels, TX. Andy and I left here on Friday night and went to San Antonio to stay the night with them so that Saturday morning we could get up and go. Let me just tell you, we had a blast! Also, I felt pretty much great the whole day. I was amazed...as was Andy, I believe. I have been feeling pretty good since the last infusion, which was about two weeks ago, and have not had a bad flare since then. I really expected that yesterday was going to be a rough day considering, but I did much better than I thought I would. We had to walk about a gazillion miles and go up about a gazillion more stairs, and I DID hurt, but I did not die, which is awesome. So, I just wanted to share the good news...I actually had a great day, and even though it was exhausting, I made it!!!! YAY to good medication!!!!

infusion woes

andymooreworldwide@gmail.com (Andy) — Wed, 27 Aug 2008 00:13:00 +0000

gabs had another infusion yesterday, her eighth overall, and fourth with the actual medication. and it sucked. really bad.

we had to be there at 8:30am so that we would have time to drive home afterward. not a big deal, as we assumed that [based on previous experience] we'd be done and on the road by 10:00am, and home at 5ish. however, we quickly learned that the guy who typically does the actual infusion (and by that i mean that he who actually sticks the catheter needle into gabs' arm) had apparently quit on friday, and they were not prepared for his absence on monday.

so, they had some other guy come in to do the stickin,' but after watching another patient wince and curse for 15 minutes at his efforts, we were less than ecstatic at the prospect of having him work on gabriele next. the other patient decided to leave and come back in a few days (when they were able to acquire an actual infusion nurse), but since we had to have it done that day, gabriele was up to bat.

i'll skip ahead 3 hours. at this point, gabriele was sitting under a blanket, sobbing, with the needle finally in...only it was in the back of her hand instead of her elbow, and she had holes in both elbows and the other hand from being stabbed around 20 times with needles of varying sizes and types, and by three different people no less. (they even called in an infusion nurse from some other clinic across town to come help. it didn't.) at one point during the ordeal gabs had to get up and walk around to shake off the impending nausea and the prospect of passing out, and at another point i had to leave her side to go sit down because i was about to pass out from watching her cry while they wiggled the needle around in her hand. (ugh, it's making me queasy just thinking about it...)

in the end, yes, she got the medicine, and some gnarly bruises and track marks, and what amounts to PTSD, i'm sure. she's doing somewhat better today, but damn this frickin' RA and all the trouble it causes.

YOU HAVE BEEN TAGGED...if you are reading this headline, then consider yourself tagged! HAHA

noreply@blogger.com (Gabriele) — Fri, 22 Aug 2008 16:40:00 +0000

Okay, so I have been TAGGED! Now, I have had to think hard about this to try to come up with six random and interesting things about myself...I hope I come through.

The tagging rules:
1. Post the rules on your blog
2. Write 6 random things about yourself
3. Tag 6 people at the end of your post
4. If you're tagged, DO IT and pass on the tag

1. I have 19 screws and 4 plates in my face. At the age of sixteen I had jaw surgery that lasted 7 1/2 hours in order to "fix" my jaw due to some of the worst TMJ my oral surgeon had ever seen. This surgery resulted in both sides of my jaw being broken, my chin being cut and moved out to meet the new jaw line, and three millimeters of bone removed from above my upper teeth. This surgery was the week before Christmas and my family thought it would be great to make me "turkey in a straw," despite the fact that I could not use a straw and was only allowed to use a syringe to "eat" or more exactly "starve." Granted, these days I hate Christmas turkey and my jaw is just as bad as it was then.

2. I am now the youngest of seven children in my family, but biologically only four. When I was little, my three older siblings would wear an "I'm a Pepper" t-shirt that they all had and a clown wig and would come in to my room while I was supposed to be napping and try to scare me. Needless to say, I was a tattle-tale and would yell each of their names due to not knowing which one of them it was in order to try to get them all in trouble for bothering me.

3. I was the Moderator of a retreat called Celebration given by the Oklahoma Presbytery when I was 17, meaning that I was in charge of over 100 youth including staff and participates for a three day camp. I was also one of the youngest ever nominated and elected to be a Deacon of my church at the age of 15 and an Elder at the age of 24.

4. I was a ballet dancer from the age of 3 to the age of 22. I was often at the studio five days a week after school and then also while in college...and I LOVED IT!!!

5. I ran a full 26.2 mile Marathon at the age of 24 after only one year of running and also completing more than I can count 5Ks, 10Ks, Half Marathons, and a relay Triathlon to which we finished in Third Place!!!!

6. I am pretty much out of random facts about myself, but I guess my final one would be that ALMOST ALL of my closest friends have been my friends since the age of 7, including but not limited to, my best friend, Briana, and my old roommate, Kristen.

So, for the tagging part. I am not sure who all reads this blog so this is a little hard for me. I know we have over 1600 views, but I am not sure who you all are. So, if you have already been tagged...oops!

1. Liz Jones, I know you love these things!!
2. Catherine Haskew...I need some random facts.
3. Erica, if you read this I have no idea.
4. CorgiMom...I don't actually know you, but we read each other's blogs.
5. Andy Moore, you have already been tagged, but you are my default because I am at a loss.
6. Laura Woods, my big sis...help me out here!

Okay, this was fun...peace out!
GEM

JOINTogether Online Store!

andymooreworldwide@gmail.com (Andy) — Mon, 18 Aug 2008 23:36:00 +0000

i'd like to announce the opening of the JOINTogether Online Store, conveniently housed & hosted by CafePress. (the Arthritis Foundation store is great, but their store is lacking in both the apparel and other cool things categories. lots of books and videos, though.)

anyway, the JOINTogether Online Store has a few shirts offered right now, but we will be expanding the selection very quickly. as an added incentive, the more stuff you buy, the quicker we can expand the selection, because all the proceeds go directly back into the store and to help fund the research and treatment of RA.

gab and i are very excited about being able to bring attention to our cause with our products, and hope that our efforts will help increase awareness of RA and lead to continued advances in diagnosis and treatment.

and of course, we'll also be proudly sporting our goods at the upcoming Arthritis Walk in College Station. everyone else will be so jealous - including YOU if you don't join our team!

Five Things I Am Thankful For:

noreply@blogger.com (Gabriele) — Tue, 12 Aug 2008 21:08:00 +0000

1. The most wonderful husband ever!!! Seriously without the help of my amazing husband, life would be too hard. You are the best babe, I love you more than words can say!!!!

2. Medication. Without this I can't, won't, and don't get out of bed every morning!!

3. Friends and family who are ever sweet, loving, and encouraging. Although I am the worst at replying to messages be that the phone, email, text, or otherwise, I love all of you and really do appreciate you!

4. My bed. It truly makes me happy to lay in my bed, it is comfy, warm, and so inviting after a long (or even short) day.

5. Good food. I love food, especially if it is fruit, veggies, fish, or candy!!! Yes, candy. I never liked candy when I was little, and often did not really even like dessert, but things change, and change they did. Candy bars, pies, cake, ice cream, gummy bears...oh it makes my day!

Arthritis Walk - Oct. 4, 2008

andymooreworldwide@gmail.com (Andy) — Mon, 04 Aug 2008 01:04:00 +0000

Apologies for us not being as diligent in our blogging lately as we should be - life has been busy, what with getting married and all! Fear not, though, as we both pledge to do better.

Speaking of pledges, we invite you (yes, you) and everyone you know to participate with us in the Bryan/College Station Arthritis Walk on Saturday, October 4th! There are several ways for you be involved: (1) follow this link to join our team and walk with us (the more the merrier!), (2) follow any of the following links to make a pledge online (team gabriele andy), or (3) any other way you can imagine!

In the coming weeks we will be posting information about other ways to get involved and fundraising activities, and sincerely hope to share in this experience with as many of our friends and family as we can.

Sharing the Love!

noreply@blogger.com (Gabriele) — Wed, 16 Jul 2008 01:04:00 +0000

My friend Brandi, (so sweet, I must say) sent me a blog award!

A mom of a little baby boy who received a heart transplant started the award to raise awareness about organ donation. Click here to read more.

Here's the award and the story from the original site:

The rules of this award are: SHARE THE LOVE!!! Share this award with all those blogs out there that you love. All the people who make you smile. All those that make you laugh. All those that make your day. All those that leave uplifting comments on your blog. **All I ask, is that you include a link to this post with the award and ask your recipient to do the same**

So,

Catherine, you make me smile. Good luck with the new job, and I can't wait to see you again soon!

Liz, friend forever, thanks for coming to the wedding, and congrats on the new house!

Yay, this is fun!! Pass on the love my friends!

Good Statistic :)

noreply@blogger.com (Gabriele) — Mon, 23 Jun 2008 23:49:00 +0000

Ok, so it's time I post. Sorry for the lack of posting on my part. I have been considering posting lately, but I feel as though if I have nothing really to say, that I am just blabbing...but isn't that the point of blogging?

So, I had the first "real" infusion at the end of last month, and my next one is on Friday. I have had many questions asking "Has it made a difference?" "How do you feel?" etc., etc. And, my answer has been, "Yeah, I think that it is making a little difference." It feels as though the intensity of the pain is a little less and I am able to endure more than previous. But, at the same time, I'm not really sure if it has made a difference yet. Part of me feels as though it has to have made some difference already, or otherwise "what's the point?" But that is ridiculous and unreasonable. I did start a new job just three days after the infusion, a job that is 40+ hours a week, which I'm not used to, and that alone can put anyone's body in a frenzy.

So as the month has gone on I look back and see from where I have come. I really do think that in the beginning there was a difference. I really do think I was not kidding myself when I thought that the intensity of the pain was less and that I was able to endure more. First off, I had to endure more, all of the sudden I was working, and made my body endure, when it wanted to or not. But as the month has come along, I feel as though it is either wearing off, or I was just dreaming, because the last week or so has been awful. Each day seems to be worse than the day before, and I am now counting down the days till Friday hoping that it will do the trick.

I realize here that the medication does take a little time and that it is okay that I am not "cured" although I sure wish I was. And in all realness, I have been doing an itsy bitsy little bit better. Just wish it was gone. So, I wait till Friday, once again, with high hopes. Hopes that the "cure" is right around the corner, and that all of those wonderful statistics that Andy keeps posting will be true for me too. (I don't mind being a statistic, as long as the statistic is good.)

lit review

andymooreworldwide@gmail.com (Andy) — Thu, 19 Jun 2008 16:54:00 +0000

i posted a link to a study in europe a couple of weeks ago, in which it was reported that at 24 weeks:

- 58.3% of participants experienced a 20% reduction in symptoms
- 43.9% of participants experienced a 50% reduction in symptoms
- 22% of participants experienced a 70% reduction in symptoms.

today, i found this article describing a study in japan with results at 24 weeks as follows:

- 80.3% of participants experienced a 20% reduction in symptoms
- 49.2% of participants experienced a 50% reduction in symptoms
- 29.5% of participants experienced a 70% reduction in symptoms
- remission occurred for 43.1% of participants
- maximum efficacy of the drug began at week 60
- at day 98, flares were completely inhibited in 80% of JRA participants

this particular study is different from ours in that the japanese study had participants either on tocilizumab or on methotrexate (MTX), whereas gabriele's study is for people on both. hopefully, this means that she will respond even better than to tocilizumab alone.

as i've been googling this morning, i also found this article describing a different study with the following results for participants at 24 weeks:

- 60.8% of participants experienced a 20% reduction in symptoms
- 37.6% of participants experienced a 50% reduction in symptoms
- 20.5% of participants experienced a 70% reduction in symptoms
- remission occurred for 30.2% of participants

and finally, one more study to add to our comparison, this one for people on both MTX and tocilizumab (like gabriele's study). again, results at 24 weeks:

- 50% of participants experienced a 20% reduction in symptoms
- 28.8% of participants experienced a 50% reduction in symptoms
- 12.4% of participants experienced a 70% reduction in symptoms

now for some math. based on these four studies, here's the average response to the new med, at 24 weeks, on 8mg/kg:

- 62.4% of participants experienced a 20% reduction in symptoms
- 39.9% of participants experienced a 50% reduction in symptoms
- 21.1% of participants experienced a 70% reduction in symptoms

nearly all of the studies indicated that participants had a discernible response to the medication after just the first dose (which Gabriele's own report corroborates). basically, things are looking hopeful. it will interesting (and likely even more encouraging) to see the 48-, 72-, and 96-week outcome results.

soldiering on

andymooreworldwide@gmail.com (Andy) — Thu, 19 Jun 2008 15:52:00 +0000

since it's been nearly two weeks since our last post, i figured it was time for an update. my apologizes for us being deliquent bloggers of late. since gabriele started working, we've both seen a dramatic increase in our "busy factor." even today, we're both working, despite it being an offical state holiday [juneteenth]. well, she's in a meeting; i'm blogging and listening to sinatra.

as you know, at her last infusion, gabriele finally received the actual medication. tomorrow will mark 3 weeks post-infusion, and which means next friday we'll be headed to okc for her second dose. (it will be her sixth infusion total, but only the second of receiving the actual drug, which i think merits us restarting our counter on these things.)

gabriele reports that the new med has had some impact thus far - the pain is "less intense." that's encouraging, though, admittedly, i personally wouldn't have known she was feeling any better just from watching her. the cool front stalled out over north texas for the last couple of days certainly hasn't helped; i'm ready for that puppy to pull on down south and bring both rain and relief.

comparitively speaking, 3 weeks of being on the medicine is still far too early in the game to make a formal assessment. [edit] in case you read this earlier today and wondered where the study info went, i decided to remove the literature review from this post and make a whole post just for it. see next post.

in other news, three weeks from tomorrow is our wedding day! pain or no pain, that kind of excitement cannot be muted. i also just recieved an email from one of my aunts outlining her plans for a pajama party in the hotel that night for whoever is staying there. indeed, we moores know how to have a good time.

they're always ahead in europe

andymooreworldwide@gmail.com (Andy) — Fri, 06 Jun 2008 23:06:00 +0000

gabriele and i are, at this very moment, sitting side-by-side on our laptops, both writing a post on here. welcome to friday night in the big city.

anyways, i found an article about a drug study conducted by the Medical University of Vienna that appears to be identical to the one that gabriele is currently in. the article has the results of their study, which are encouraging.

while it's not too long of an article, but i'm just going to link to it here.

[EDIT]: for quick reference, gabriele is on tocilizumab, which was recently given the brand name Acterma. it is the first drug of its kind being used to treat RA. brief overview here.