My lack of updates is sad. I know.
On more than one occasion I have started a new post and decided not to continue with it. I don't know what my problem is. Maybe I am rebelling against my own blog. Who knows.
I have nothing new to report. Jackson is still doing well. Let me be honest here. His case has never been bad. I mean it was in the beginning but because he was diagnosed quickly/early and because we found what works for him fast, he has been a mild case to say the least. He has several friends that are not doing so well and my heart breaks for these kids. I want to wave a magic wand over them, and Jackson too, and make this all go away for them and their families. But then I change my mind. I know that sounds awful but here me out on this one....
If it weren't for this HORRIBLE disease (yes, disease. This is not JUST arthritis, this is one's own body attacking itself) I would not have so many wonderful people in my life. My family has bonds with other JA families that no one can ever understand. This disease is bad, it hurts, and I hate it BUT without it, I would not have my JA family. Together we are fighting for a cure.
Wow, this blog has turned into me rambling. I have so much I want to say, so much I want to talk about it but I don't know how to voice it. I am always afraid that I will say the wrong thing. So sometimes I say nothing at all.
OK, I'm done.
Love to you all.
1.23.2012
10.24.2011
Goodbye Naproxin, Hello Mobic!
Holy lack of updates Batman! I apologize for that.
Let's see, where to begin.....
Oh! I know. Let's begin with Jackson's most recent rheumy appointment. It was on the 14th of this month and it went very well! He had been complaining of knee pain (in both knees) since starting school. As you may remember, he is in a new school and it's two stories. Third, fourth, and fifth graders are upstairs, along with music and art. But P.E., cafeteria, nurse, office, library, and more are on the first floor. There IS an elevator and I was worried that one of two things would happen. 1.) He would refuse to use it because he wants to be like every one else. or 2.) He is going to use it exclusively and never use the stairs. He does a combo of both. And my worry that he would keep quiet when and if he was ever in pain? Yeah, that's out the window as well. He always tells his teacher (s) and the staff when he hurts. Yay for self advocating!!
So, back to that appointment. We mentioned the knee pain to the doc and she asked about the naproxin. Does he take it twice a day like he should? That would be a big fat NO. I remind him time and time again and he forgets. I also think that after almost TWO years of being on it, his body has built up a tolerance and it's no longer working. His doctor mention Mobic, like naproxin but he would only have to take it once a day, at night. And I have heard from other parents that their children are on it and it's working well for them. I have high hopes for it but also worry that a tolerance will be built up against it too. But for now, well for now, it's Mobic!
Other than the med change, Jackson got his flu shot and the normal blood draw for labs. We go back in February!
In other news, Jackson and I volunteered for The Arthritis Foundation this past Saturday. It was a good time and we got to meet some new friends. The adult honoree for the Jingle Bell Run/Walk in December was there and meeting her was special. She takes Humira and hates it just as much as Jackson. I am hoping to stay in contact with her and her husband, thank goodness for Facebook! And I think because of her, Jackson was able to do his Humira shot Saturday night with no fight. Thank you Suzy!!
One more thing. We have several families that are dealing with very tough things right now, their kiddos are not doing so well. When you say your prayers, say a little prayer for our JA families. These children are tough, brave, and strong. I admire them.
Let's see, where to begin.....
Oh! I know. Let's begin with Jackson's most recent rheumy appointment. It was on the 14th of this month and it went very well! He had been complaining of knee pain (in both knees) since starting school. As you may remember, he is in a new school and it's two stories. Third, fourth, and fifth graders are upstairs, along with music and art. But P.E., cafeteria, nurse, office, library, and more are on the first floor. There IS an elevator and I was worried that one of two things would happen. 1.) He would refuse to use it because he wants to be like every one else. or 2.) He is going to use it exclusively and never use the stairs. He does a combo of both. And my worry that he would keep quiet when and if he was ever in pain? Yeah, that's out the window as well. He always tells his teacher (s) and the staff when he hurts. Yay for self advocating!!
So, back to that appointment. We mentioned the knee pain to the doc and she asked about the naproxin. Does he take it twice a day like he should? That would be a big fat NO. I remind him time and time again and he forgets. I also think that after almost TWO years of being on it, his body has built up a tolerance and it's no longer working. His doctor mention Mobic, like naproxin but he would only have to take it once a day, at night. And I have heard from other parents that their children are on it and it's working well for them. I have high hopes for it but also worry that a tolerance will be built up against it too. But for now, well for now, it's Mobic!
Other than the med change, Jackson got his flu shot and the normal blood draw for labs. We go back in February!
In other news, Jackson and I volunteered for The Arthritis Foundation this past Saturday. It was a good time and we got to meet some new friends. The adult honoree for the Jingle Bell Run/Walk in December was there and meeting her was special. She takes Humira and hates it just as much as Jackson. I am hoping to stay in contact with her and her husband, thank goodness for Facebook! And I think because of her, Jackson was able to do his Humira shot Saturday night with no fight. Thank you Suzy!!
One more thing. We have several families that are dealing with very tough things right now, their kiddos are not doing so well. When you say your prayers, say a little prayer for our JA families. These children are tough, brave, and strong. I admire them.
7.03.2011
Vocalpoint
Hey ya'll! How is everyone on this fine 4th of July weekend?
Quick update on my kiddo - He has not had MTX in about 3 weeks and he is doing well. He does complain of knee pain in the evenings but once he's reminded to take his Naproxin, he usually feels better soon after that. Tonight, July 3rd, he will start his new higher dosage of Humira, 40mg. I'm nervous, it's 20 more mg that what his body is used to. Heck, it's 20 more mg that what HE is used to. He will get Humira every two weeks from here on out and I am hopeful that we won't have to go back to MTX. That is not a nice drug and it makes my normal 8 year old mad and angry.
Now to talk about Vocalpoint. This website is where one can get free samples, take surveys, read articles with valuable information, join in on message board conversations and much more. I will be honest with you and admit that I often forget I am even a member of Vocalpoint. A few days ago, when I checked my mail, I was reminded. I recieved a free full size bottle of Downy Unstopables.
Quick update on my kiddo - He has not had MTX in about 3 weeks and he is doing well. He does complain of knee pain in the evenings but once he's reminded to take his Naproxin, he usually feels better soon after that. Tonight, July 3rd, he will start his new higher dosage of Humira, 40mg. I'm nervous, it's 20 more mg that what his body is used to. Heck, it's 20 more mg that what HE is used to. He will get Humira every two weeks from here on out and I am hopeful that we won't have to go back to MTX. That is not a nice drug and it makes my normal 8 year old mad and angry.
Now to talk about Vocalpoint. This website is where one can get free samples, take surveys, read articles with valuable information, join in on message board conversations and much more. I will be honest with you and admit that I often forget I am even a member of Vocalpoint. A few days ago, when I checked my mail, I was reminded. I recieved a free full size bottle of Downy Unstopables.
This product is brand new and only in select markets right now. It comes in two scents, Fresh and Lush. I received Fresh and at first I wasn't sure how this was going to work. It turns out it's simple, just fill the cap with as much or as little as you want, toss it into the washer (before tossing in clothes and detergent), and that's it! It's safe for front loaders and traditional top loaders, also HE friendly too. I was hesitant. But upon retreiving the clothes from the dryer I was shocked. They smelled great! I also have a dryer bar in my dryer and the Downy Unstopables smell was very prominent over it. Overall it's a pretty awesome product.
6.24.2011
The one where we tell methotrexate to F off.........
Today, my readers, was rheumy appointment day. I am pretty awesome and made it to Shands in an hour and a half, go me. :)
But seriously...we got some news today that I thought we'd never hear.
If you'll remember, four months ago at our last visit, the idea of Jackson stopping the MTX was brought up. I was a mixture of emotions, wondering if that would and could really work and super excited to get rid of one shot. The other option was to keep the MTX and take Humira to every two weeks with the MTX.
Today, I am happy to report that not only are we able to tell MTX to F off but we also get to take Humira to every two weeks!!!! We are upping the Humira from 20 mg to 40mg but if that means he only gets a shot every two weeks then we'll take it!!
His wrists and ankles are still slightly stiff but not enough that it bothers him. He has been complaining of knee pain at night however once he takes his Naproxin, he's usually good.
The "R" word was never said today. Nor was it considered. But deep down I feel that we are going in that direction, one step at a time.
In about a month we will be able to see just what the Humira can do without the MTX. Dr. E said it takes about a month for the MTX to get out of his system so we'll watch and wait.
But we'll also celebrate, even if it's a small celebration. =)
But seriously...we got some news today that I thought we'd never hear.
If you'll remember, four months ago at our last visit, the idea of Jackson stopping the MTX was brought up. I was a mixture of emotions, wondering if that would and could really work and super excited to get rid of one shot. The other option was to keep the MTX and take Humira to every two weeks with the MTX.
Today, I am happy to report that not only are we able to tell MTX to F off but we also get to take Humira to every two weeks!!!! We are upping the Humira from 20 mg to 40mg but if that means he only gets a shot every two weeks then we'll take it!!
His wrists and ankles are still slightly stiff but not enough that it bothers him. He has been complaining of knee pain at night however once he takes his Naproxin, he's usually good.
The "R" word was never said today. Nor was it considered. But deep down I feel that we are going in that direction, one step at a time.
In about a month we will be able to see just what the Humira can do without the MTX. Dr. E said it takes about a month for the MTX to get out of his system so we'll watch and wait.
But we'll also celebrate, even if it's a small celebration. =)
6.11.2011
An update, sorta.
Hey people!
I apologize for the lack of updates. Things have been...well not crazy, but not really slow either.
We recently had our Arthritis Walk! It was held in Lake Eola and I think it went wonderfully. We had a "raffle" and raised around $400 with just that alone! I also won, in a round about way, a beautiful Vera Bradley purse and change purse. Thank you again Donna! Love you! Here is a picture of some of the events and people that attended the walk....
I loved being on the committee (even though I slacked some times) and thoroughly enjoyed every one's company! I can't wait for next year's walk!
I also had an auction basket for The Arthritis Foundation and although I had hoped it would bring in big money, it ended up bringing in only $20. Ya know what though? That's $20 more dollars that The Arthritis Foundation has for research! And I also have two other donations to add to Team Apple Jacks too! We have raised $338 so far!!
Next up for us is Jackson rheumy appointment on the 24th.
I apologize for the lack of updates. Things have been...well not crazy, but not really slow either.
We recently had our Arthritis Walk! It was held in Lake Eola and I think it went wonderfully. We had a "raffle" and raised around $400 with just that alone! I also won, in a round about way, a beautiful Vera Bradley purse and change purse. Thank you again Donna! Love you! Here is a picture of some of the events and people that attended the walk....
I also had an auction basket for The Arthritis Foundation and although I had hoped it would bring in big money, it ended up bringing in only $20. Ya know what though? That's $20 more dollars that The Arthritis Foundation has for research! And I also have two other donations to add to Team Apple Jacks too! We have raised $338 so far!!
Next up for us is Jackson rheumy appointment on the 24th.
5.01.2011
Arthritis Awareness Month and an auction!!
First and foremost, May is Arthritis Awareness Month. My passion, well one of them, is to make the world aware that Kids Get Arthritis Too!! Please check out this website, early detection is the key when it comes to our children. The longer it takes to get a diagnosis, the more it is likely that damage will be done.
Wanna have the chance to bid on an awesome basket of goodies AND help out the Arthritis Foundation too?! Fantastic!! But before I present the basket and all the details, I need to thank Amy Cunningham for the idea and I also need to thank Elizabeth Pascoe for approaching me with the idea and getting all the items together. And now, without further ado, here is the basket and all the details!
In this basket are items from Mary Kay, For Your Pleasure, Tastefully Simple, Partylite, and Thirty One. Together, all items are valued at over $100. Now for the details......The auction starts today and will end at 9am on May 31st. If you would like to place your bid, please email me at courtney.amber79@gmail.com. I will keep track of all the emails/bids and the highest bidder will be notified by noon on the 31st. There are a few ways to get the money to the Arthritis Foundation. You can send me a check and I will be sure to get it delivered to the Central Florida Office or you can go to our Team Walk page and donate the winning amount that you bid in honor of Jackson and Team Apple Jacks. Once I have received the money or you have made the donation via the walk page, I will get with you and present you with your basket of goodies (if you're local, lol) or I will get them in the mail to you!
Basket contents are as follows:
Partylite - Apricot Daisy Pillar Courtesy of Dawn Beske 407-782-8704 dtbeske@aol.com www.partylite.biz/dawnbeske
Tastefully Simple - Twisty Grahams Courtesy of Jean Morgan 571-277-0221 jmorganva4@yahoo.com www.tastefullysimple.com/web/jmorgan1
Mary Kay - Satin Lips Courtesy of Evette Ruiz 321-689-1249 evetteruiz@marykay.com www.marykay.com/evetteruiz
Thirty-One - Small Tote Courtesy of Sherry Wallace 863-661-4615 sherryw725@hotmail.com www.mythirtyone.com/53299
FYP - Splash, Sexy Suds, Morrocan Nights hand and body quench Courtesy of Elizabeth Pascoe 352-250-1542 elizabethfyp@gmail.com www.foryourpleasure.com/partywithelizabeth
Happy Bidding!!
Wanna have the chance to bid on an awesome basket of goodies AND help out the Arthritis Foundation too?! Fantastic!! But before I present the basket and all the details, I need to thank Amy Cunningham for the idea and I also need to thank Elizabeth Pascoe for approaching me with the idea and getting all the items together. And now, without further ado, here is the basket and all the details!
Basket contents are as follows:
Partylite - Apricot Daisy Pillar Courtesy of Dawn Beske 407-782-8704 dtbeske@aol.com www.partylite.biz/dawnbeske
Tastefully Simple - Twisty Grahams Courtesy of Jean Morgan 571-277-0221 jmorganva4@yahoo.com www.tastefullysimple.com/web/jmorgan1
Mary Kay - Satin Lips Courtesy of Evette Ruiz 321-689-1249 evetteruiz@marykay.com www.marykay.com/evetteruiz
Thirty-One - Small Tote Courtesy of Sherry Wallace 863-661-4615 sherryw725@hotmail.com www.mythirtyone.com/53299
FYP - Splash, Sexy Suds, Morrocan Nights hand and body quench Courtesy of Elizabeth Pascoe 352-250-1542 elizabethfyp@gmail.com www.foryourpleasure.com/partywithelizabeth
Happy Bidding!!
4.13.2011
2011 Arthritis Walk
http://2011aworlando.kintera.org/theapplejacks
The above link will take you to our team/donation page. Once there you can either join our team (if you're local) and/or make a donation. Our goal is $500 this year!
Jackson is the boy honoree this year and I was lucky enough to get a meeting with his school's Principal to see if we could get them involved in helping us raise funds. I was thankful to have Tony with me and the meeting went VERY well! We are just waiting to hear back from her about how they want to help. This week is FCAT so the ball will likely not start rolling until next week.
Health wise Jackson is doing well. Two weeks in a row he did run low grade fevers on a Monday and after the second Monday, I made an appointment with his pediatrician. There was no rash (he was tested for strep, it came back negative) and none of his joints are in an active flare so we're just keeping an eye on him per his pediatrician and rheumy's advice.
We have some friends that are not doing so well so please say an extra prayer for them and keep them in your thoughts!
The above link will take you to our team/donation page. Once there you can either join our team (if you're local) and/or make a donation. Our goal is $500 this year!
Jackson is the boy honoree this year and I was lucky enough to get a meeting with his school's Principal to see if we could get them involved in helping us raise funds. I was thankful to have Tony with me and the meeting went VERY well! We are just waiting to hear back from her about how they want to help. This week is FCAT so the ball will likely not start rolling until next week.
Health wise Jackson is doing well. Two weeks in a row he did run low grade fevers on a Monday and after the second Monday, I made an appointment with his pediatrician. There was no rash (he was tested for strep, it came back negative) and none of his joints are in an active flare so we're just keeping an eye on him per his pediatrician and rheumy's advice.
We have some friends that are not doing so well so please say an extra prayer for them and keep them in your thoughts!
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