No, it's not control that I am spiraling out of. I thought that was it but now I know it's def. not control. But what is it then?
I know this blog is supposed to be about my son and our journey with juvenile arthritis. I have another blog that I use via live journal but it's private and I have found that most, if not all, of my friends use blogger. So forgive me but this blog will not be about Jackson and his arthritis.
I feel that I am loosing my grip on my life again. This has happened before, not too long ago, but I was able to pull myself out of it. I feel like nothing I am doing is right, or correct. I know that I am not alone on this journey but many many days I feel exactly that. I have days when I don't feel like I don't connect to any one. I have moments when I feel alone and lost. I feel like my best days are not really my best and my worst days are just plain ol garbage.
I have friends. And I love them dearly but the fact is life gets in the way and we have not seen each other in quite some time and that saddens me.
Christmas has come and gone and it was nice to spend time with family but I am ready to pack it all away for another year.
I want to move but quite frankly we can not afford to do that at this time. I love my neighborhood but I would love to have more space. (and there is a part of me that would love to get away from the drama that is my neighbor across the street) I found out this week that the family I work for has suffered a job loss. I asked today if she would still need me and she said here and there. I guess working here and there is better than not working at all but I crave full time, Monday through Friday, work. I'll continue to do as I have, apply, apply, apply.
12.28.2010
12.27.2010
Ch Ch Ch Changes
About a month ago, FL had a cold snap. It was during this time that a mysterious rash appeared on Jackson's body. It was a one shot week and I noticed it as I was putting the emla cream on his arm. His arm felt very prickly and when I turned him around I saw the rash. It covered his back but it wasn't very red or raised. My first thought was maybe he was having an allergic reaction to the change in body wash. I took a picture of it and posted it to my arthritis friends group on FB to get some feedback. I had remembered seeing a picture of another child with a similer looking rash. Turns out it was just a case of extremely dry skin with the other child so I was inclined to think the same about Jackson. When I noticed the rash first, it was a Sunday, and by Tuesday it still wasn't gone but it didn't look any worse. I should mention that it didn't look any better either. I called the pediatrician Tuesday morning and made an appointment for that evening.
Jackson still has the molluscum and I was sorta concerned about that as well so I mentioned that to the Doctor as well. Turns out the molluscum were doing ok and I can proudly say that at this moment they are clearing up and going away! The other mysterious rash though? Yeah, she was inclined to think it was extremely dry skin and gave us a script for some hydrocortizone cream. She also gave us some samples of Cetaphil and some recommendations. I bought the Cetaphil bar soap but had to wait to get him some lotion until Patrick got paid. While waiting for that, the rash got worse and it began to spread. I began to worry.
Patrick got paid and I bought some Suave Lotion for extremely dry skin. For about a week and a half, I lathered Jackson up in the am and again after his nightly shower. In the mean time I began to wonder if Jackson had yet another type of arthritis. So I began the research for psoriatic arthritis. I looked at pictures and I read all the information my brain could take. I talked to my arthritis family and got their feedback as well. I found that people with psoriatic arthritis suffer from what is often referred to as "sausage" fingers and toes. BINGO! When Jackson was first diagnosed over a year ago he had the sausage like fingers and toes. I guess because psoriasis doesn't really run in our family it wasn't even a thought in any one's head. That and the rash hadn't presented its self yet. In speaking with another mom I found out that the rash could take up to 10 years to show!! 10 YEARS people!
I don't want to self diagnose but I really believe that Jackson has psoriatic arthritis. He was initially diagnosed with polyarticular.
His next appointment his Feb. 16th. and I hope to ask the Doctor a lot of questions and come out with a lot of answers! Wish us luck!
(I should also mention that despite the colder weather FL has been having, Jackson is doing and feeling well.)
Jackson still has the molluscum and I was sorta concerned about that as well so I mentioned that to the Doctor as well. Turns out the molluscum were doing ok and I can proudly say that at this moment they are clearing up and going away! The other mysterious rash though? Yeah, she was inclined to think it was extremely dry skin and gave us a script for some hydrocortizone cream. She also gave us some samples of Cetaphil and some recommendations. I bought the Cetaphil bar soap but had to wait to get him some lotion until Patrick got paid. While waiting for that, the rash got worse and it began to spread. I began to worry.
Patrick got paid and I bought some Suave Lotion for extremely dry skin. For about a week and a half, I lathered Jackson up in the am and again after his nightly shower. In the mean time I began to wonder if Jackson had yet another type of arthritis. So I began the research for psoriatic arthritis. I looked at pictures and I read all the information my brain could take. I talked to my arthritis family and got their feedback as well. I found that people with psoriatic arthritis suffer from what is often referred to as "sausage" fingers and toes. BINGO! When Jackson was first diagnosed over a year ago he had the sausage like fingers and toes. I guess because psoriasis doesn't really run in our family it wasn't even a thought in any one's head. That and the rash hadn't presented its self yet. In speaking with another mom I found out that the rash could take up to 10 years to show!! 10 YEARS people!
I don't want to self diagnose but I really believe that Jackson has psoriatic arthritis. He was initially diagnosed with polyarticular.
His next appointment his Feb. 16th. and I hope to ask the Doctor a lot of questions and come out with a lot of answers! Wish us luck!
(I should also mention that despite the colder weather FL has been having, Jackson is doing and feeling well.)
12.24.2010
The End of 2010
Here's wishing you, my readers, and your families a very happy holiday.
Enjoy your families and make a million memories!
Enjoy your families and make a million memories!
11.26.2010
One Year
Yesterday marked our one year anniversary. November 25th, 2009 Jackson was diagnosed with JIA. I wanted to blog last night but I had family in town and my siblings spent the night at my house so I hung out with them and as it turns out, spent some quality time with them that I am not getting tonight. Tonight they were supposed to spend the night again but that didn't work out and I am sad about it.
But I digress. November 25th is a day that we will never forget.
I am sad. I am thankful. I am a mixture of emotions right now that I can not convey into words. I miss my siblings, am angry with my mother, sad for my children, and on minimal speaking terms with my husband.
Thanksgiving was different this year.
I am hoping that Christmas will not be but some thing tells me otherwise.
But I digress. November 25th is a day that we will never forget.
I am sad. I am thankful. I am a mixture of emotions right now that I can not convey into words. I miss my siblings, am angry with my mother, sad for my children, and on minimal speaking terms with my husband.
Thanksgiving was different this year.
I am hoping that Christmas will not be but some thing tells me otherwise.
11.19.2010
Frustrations and Thanks
There are many frustrations that come with being a parent to a child with any kind of disability, or illness. Each family has their own unique and individual frustrations but if you look deep down, you might find that some of the frustrations your family is feeling are the same frustrations that another family is feeling. We all need a support system. It's easy to think you are alone in this, it's easy to curse the Heavens and ask God why. It's easy to hate.
Jackson will have his 1 year anniversary on November 25th. On that day it will be one year since his diagnosis. Some of you may think that arthritis is no big deal. It's not cancer right? How can it possibly be a life threatening issue? Cancer kills people, arthritis does not. Can I tell you how WRONG you are? If you have a healthy child, be thankful. And while you are being thankful for your healthy child(ren) please say a prayer for the children that are not.
Thanksgiving is right around the corner, next week in fact! ( Side note - Am I the only one wondering where the year has gone?! Thanksgiving already!!) This year I am thankful that Jackson has amazing doctors. I am thankful for the Mom Squad, and Tony! I am thankful for The Arthritis Foundation. I am even thankful for the scary meds that Jackson has to take because without these meds, who knows how much damage the arthritis could have done. Oh and I am also thankful for a quick diagnosis. We know some people that weren't diagnosed for months or even years.
I am also thankful for my husband who does the dirty work, if you will, of giving Jackson his weekly shots. I am thankful that he has finally found a new job where he seems happy. I am thankful for my oldest son, Shawn, for being who he is. He may not fully understand what his brother has or goes through, but he tries and that is all that I can ask for. I am thankful for my family, immediate and extended, and that includes you JA family! Without the love and support of all of you, I know I would be a basket case. I am even thankful for the people that don't understand and think that arthritis is just for older people. For it is these very people that we get to educate.
Jackson will have his 1 year anniversary on November 25th. On that day it will be one year since his diagnosis. Some of you may think that arthritis is no big deal. It's not cancer right? How can it possibly be a life threatening issue? Cancer kills people, arthritis does not. Can I tell you how WRONG you are? If you have a healthy child, be thankful. And while you are being thankful for your healthy child(ren) please say a prayer for the children that are not.
Thanksgiving is right around the corner, next week in fact! ( Side note - Am I the only one wondering where the year has gone?! Thanksgiving already!!) This year I am thankful that Jackson has amazing doctors. I am thankful for the Mom Squad, and Tony! I am thankful for The Arthritis Foundation. I am even thankful for the scary meds that Jackson has to take because without these meds, who knows how much damage the arthritis could have done. Oh and I am also thankful for a quick diagnosis. We know some people that weren't diagnosed for months or even years.
I am also thankful for my husband who does the dirty work, if you will, of giving Jackson his weekly shots. I am thankful that he has finally found a new job where he seems happy. I am thankful for my oldest son, Shawn, for being who he is. He may not fully understand what his brother has or goes through, but he tries and that is all that I can ask for. I am thankful for my family, immediate and extended, and that includes you JA family! Without the love and support of all of you, I know I would be a basket case. I am even thankful for the people that don't understand and think that arthritis is just for older people. For it is these very people that we get to educate.
11.03.2010
Pain
Today is Weds. November 3rd and Jackson complained of his knee hurting. I am mainly documenting for my own personal thing, will write it down in his book before bed.
10.29.2010
As if there isn't enough to worry about.........
http://thenewsoftoday.com/sandoz-initiates-methotrexate-recall/4311/\
Methotrexate is being recalled but not all of them.
:( We have enough to worry about by just giving our kids these meds, now this.
Methotrexate is being recalled but not all of them.
:( We have enough to worry about by just giving our kids these meds, now this.
10.25.2010
Document
This weekend, starting with Friday, Jackson started to complain about his knee hurting him. It's been two weeks since he's had a methotrexate shot. Then Saturday morning while at the show n sell [cub scouts] he complained of his back hurting. Again, it's been two weeks since he's had a methotrexate shot. He's taking his naproxin twice a day again, and I'm not sure if it's helping.
We have family in town so this past weekend was crazy busy. With that being said, Jackson didn't get his shots last night. Instead, he's getting them tonight. Please don't judge me and think that we were TOO busy for him to get his shots. That wasn't and isn't the case. Simply put, we didn't expect to be out so late yesterday.
I'm using my blog as a way to document his pain. So that if it happens again, I can mention it to the docs. I'm wondering if maybe two weeks between methotrexate shots isn't going to work. Only time will tell though.
I'm also writing it down. Well I'm jotting it down in a notebook that has been other random thoughts and notes in it and to be honest, I need to find a notebook that I dedicate strictly to Jackson's pain and flareups. Mental note made.
Other than knee pain he has foot pain but a lot of that is because he doesn't have much for arch support and his ankles tend to "bow" in. We're picking up his orthotic inserts next week so that should help within time. With all the walking we did this weekend, I am happy that he isn't in more pain. He was a trooper and when I asked him if he wanted to go to the van to sit and would tell me no. Eventually he gave him though.
We have family in town until about November 7th so this coming weekend is sure to be busy as well. He'll be getting both MTX and Humira tonight though so that should help.
Until next time.........
We have family in town so this past weekend was crazy busy. With that being said, Jackson didn't get his shots last night. Instead, he's getting them tonight. Please don't judge me and think that we were TOO busy for him to get his shots. That wasn't and isn't the case. Simply put, we didn't expect to be out so late yesterday.
I'm using my blog as a way to document his pain. So that if it happens again, I can mention it to the docs. I'm wondering if maybe two weeks between methotrexate shots isn't going to work. Only time will tell though.
I'm also writing it down. Well I'm jotting it down in a notebook that has been other random thoughts and notes in it and to be honest, I need to find a notebook that I dedicate strictly to Jackson's pain and flareups. Mental note made.
Other than knee pain he has foot pain but a lot of that is because he doesn't have much for arch support and his ankles tend to "bow" in. We're picking up his orthotic inserts next week so that should help within time. With all the walking we did this weekend, I am happy that he isn't in more pain. He was a trooper and when I asked him if he wanted to go to the van to sit and would tell me no. Eventually he gave him though.
We have family in town until about November 7th so this coming weekend is sure to be busy as well. He'll be getting both MTX and Humira tonight though so that should help.
Until next time.........
10.17.2010
A Message for Juvenile Arthritis
Dear JA,
Eff you! Seriously. Because of you JA, every weekend my child throws up before his shot. EVERY weekend. Without fail. He also screams, loud. Why can't my 8 year old be just that, an 8 year old! An 8 year old with no worries, no fears, and most of all, a childhood that isn't being robbed by an aweful auto immune disease. Instead, my 8 year old has to be reminded to take his TWICE daily dose of Naproxin, his once a day dose of generic Prilosec, and his biweekly dose of Leucavorin. Because of you JA, my child can't simply get a cold and get over it, oh no, he gets a cold and I have to watch him like a hawk to make sure it doesn't get worse. JA, you suck.
Sincerely,
Courtney
PS. Don't think I don't see the pain you are causing to Jackson's friends that have JA too. I see it and it makes me want to kick your ass all the more.
_________________________________________________________________________________
Eff you! Seriously. Because of you JA, every weekend my child throws up before his shot. EVERY weekend. Without fail. He also screams, loud. Why can't my 8 year old be just that, an 8 year old! An 8 year old with no worries, no fears, and most of all, a childhood that isn't being robbed by an aweful auto immune disease. Instead, my 8 year old has to be reminded to take his TWICE daily dose of Naproxin, his once a day dose of generic Prilosec, and his biweekly dose of Leucavorin. Because of you JA, my child can't simply get a cold and get over it, oh no, he gets a cold and I have to watch him like a hawk to make sure it doesn't get worse. JA, you suck.
Sincerely,
Courtney
PS. Don't think I don't see the pain you are causing to Jackson's friends that have JA too. I see it and it makes me want to kick your ass all the more.
_________________________________________________________________________________
10.07.2010
October 6, 2010
Today was Jackson's appointment in the swamp. I'm always nervous for these. Things change so much. Today was no different.
I'm going to get right to the point here. I walked out of the office with 4 scripts.
One for customized orthotics for arch support. Jackson doesn't have an arch. I have already called and made the appoint for next week. He also needs new shoes, shoes that offer support, Dr. E recommended Asics. We're going to look into how much they are this weekend although it doesn't matter because he NEEDS them so he will have them.
The next script is for Bactroban ointment. A few months ago Jackson started to get these "bumps". Mainly in the armpit area and the upper inner thigh. Went to the Pediatrician to find out what the heck was going on. She explained it is something called Molluscum Contagiosum. It's mainly a childhood thing and most children end up getting it. In a "normal" child, like my oldest, they normally go away within a years time. Yeah, I said a year. I know, right?! Crazy long! And yes, it's contagious, however, it's not harmful and deadly. Jackson is not a "normal" child though. Jackson has a suppressed immune system so chances are he'll have it for awhile. The Bactroban ointment will hopefully help, along with some other things that I still need to google and figure out.
A new script was also written for Naproxin which he is back to taking twice a day. :( Could be worse though and I know that and I also remind myself that each and every day.
A now for the good news? I think it's good. I hope you will too. Dr. E thinks that the Humira is working well for Jackson. She believes that it what is keeping him from flaring. Therefore, we are going to give Jackson methotrexate ONCE EVERY OTHER WEEK. No more once a week, one week he'll get two shots [Humira and Metho] and the next week he'll just get the Humira. She mentioned that she didn't like to do this cold turkey so for the next 4 months this is how it will be done. Unless he goes into a bad flare and then of course it can change. We go back on Feb. 16th.
So there it is. The good, the not so bad, and the ugly?
I'm going to get right to the point here. I walked out of the office with 4 scripts.
One for customized orthotics for arch support. Jackson doesn't have an arch. I have already called and made the appoint for next week. He also needs new shoes, shoes that offer support, Dr. E recommended Asics. We're going to look into how much they are this weekend although it doesn't matter because he NEEDS them so he will have them.
The next script is for Bactroban ointment. A few months ago Jackson started to get these "bumps". Mainly in the armpit area and the upper inner thigh. Went to the Pediatrician to find out what the heck was going on. She explained it is something called Molluscum Contagiosum. It's mainly a childhood thing and most children end up getting it. In a "normal" child, like my oldest, they normally go away within a years time. Yeah, I said a year. I know, right?! Crazy long! And yes, it's contagious, however, it's not harmful and deadly. Jackson is not a "normal" child though. Jackson has a suppressed immune system so chances are he'll have it for awhile. The Bactroban ointment will hopefully help, along with some other things that I still need to google and figure out.
A new script was also written for Naproxin which he is back to taking twice a day. :( Could be worse though and I know that and I also remind myself that each and every day.
A now for the good news? I think it's good. I hope you will too. Dr. E thinks that the Humira is working well for Jackson. She believes that it what is keeping him from flaring. Therefore, we are going to give Jackson methotrexate ONCE EVERY OTHER WEEK. No more once a week, one week he'll get two shots [Humira and Metho] and the next week he'll just get the Humira. She mentioned that she didn't like to do this cold turkey so for the next 4 months this is how it will be done. Unless he goes into a bad flare and then of course it can change. We go back on Feb. 16th.
So there it is. The good, the not so bad, and the ugly?
9.29.2010
World Arthritis Day - October 12th! (and an update)
I am asking everyone that I know to participate in World Arthritis Day on 10/12/10. How can you participate? Simple! Wear BLUE! Blue is the color of the ribbon that represents arthritis. And it would be awesome if all my family and friends were to GO BLUE!
If you go here, you learn more about World Arthritis Day.
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Jackson has been doing well. We recently went to Gainesville for a JA Family Connect Day and had a great time!! The kids were kept occupied by a balloon man, and plenty of helpers so that us parents could hear the amazing speakers. I shed many tears and laughs. And it was pretty damn interesting to learn from Dr. Elder how they decide what meds to put our kiddos on.
Jackson is still doing well. His knee was bothering him the other day and it just so happened to be a day when he had P.E. I wrote a note to the Coach to let him know that Jackson needed to take it easy. And he did just that. We return to Gainesville on October 6th for his appointment. 4 months ago when we were there for his last appointment there was some talk about maybe taking him off the Humira.....I'm anxious to see about that.
If you go here, you learn more about World Arthritis Day.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jackson has been doing well. We recently went to Gainesville for a JA Family Connect Day and had a great time!! The kids were kept occupied by a balloon man, and plenty of helpers so that us parents could hear the amazing speakers. I shed many tears and laughs. And it was pretty damn interesting to learn from Dr. Elder how they decide what meds to put our kiddos on.
Jackson is still doing well. His knee was bothering him the other day and it just so happened to be a day when he had P.E. I wrote a note to the Coach to let him know that Jackson needed to take it easy. And he did just that. We return to Gainesville on October 6th for his appointment. 4 months ago when we were there for his last appointment there was some talk about maybe taking him off the Humira.....I'm anxious to see about that.
9.09.2010
My apologies.
I don't update. I have nothing to update. That's good, right?
But wait, I do have one thing to update. I had to cancel Jackson's eye appointment with CMS. I didn't have a way to get there and I keep forgetting to call and reschedule. I know how important it is. So I will call Monday and reschedule.
We go to G-ville on the 6th of October for Jackson's appointment.
We're hoping to make it to the JA Family connect day on the 18th of this month. If we have the $$ for gas, we'll be there!
But wait, I do have one thing to update. I had to cancel Jackson's eye appointment with CMS. I didn't have a way to get there and I keep forgetting to call and reschedule. I know how important it is. So I will call Monday and reschedule.
We go to G-ville on the 6th of October for Jackson's appointment.
We're hoping to make it to the JA Family connect day on the 18th of this month. If we have the $$ for gas, we'll be there!
7.14.2010
Another bump in the road that is our life
On Monday, while at summer "camp" Jackson had his eyes checked, for free, by Florida's Vision Quest . They didn't do a full complete check, like to see if the arthritis is doing a number on his eyes, but it was free and lord knows he needed them checked. Guess what? He needs glasses. I'm not surprised. So not only does FL's vision quest do the exam for free, they supply the kids with one pair of glasses, child's choice, for free! And if we want to order a back up pair it's only $40.
We still have an appointment on the 5th with CMS. We'll know more than.
We still have an appointment on the 5th with CMS. We'll know more than.
7.07.2010
Yippee!!
Today was appointment day in The Swamp [Gainesville, for my new readers, is home of the Florida Gators!! We who love them call their home in Gainesville "The Swamp"] Our appointment with Dr. Modica was scheduled for 12:30 at Shands. We arrived earlier [hooray!] and parked at the medical plaza, taking the shuttle over to the Hospital, where Pediatric Rhuematology has moved. We checked in, waited, Jackson was called for his vitals, and after those were taken we waited a bit more. *Bonus while waiting? We got to see Deetra!!*
We were called back to our room and waited for a bit before Dr. Modica came in. We weren't scheduled for an infusion but that can and has changed in a matter of minutes. Our friends Deetra and family and Tiffany and family were in the infusion room where their kiddos were getting their medicine. I made a mental note to make sure I stopped by there to say hello before we left.
Dr. Modica came in and began to check out Jackson, moving his wrists, knees, ankles, arms, legs, neck, pretty much every where. Guess what? The only place where he was hurting and/or swollen was in his wrists!!! NO WHERE ELSE! And we also get to lower his naproxin dose to once a day! I can't tell you how happy that made me, and Jackson too! His combo of drugs is working, and he seems to be getting better. She said that we may even be able to stop the Humira if is he still doing well in 4 months. That and if his labs are good.
We stopped by the infusion room [which is MUCH bigger now] and I found Deetra. Poor Sydney looked sad, broke my heart, that little girl is amazing. Wait, ALL the JRA kids are amazing, and their siblings are pretty amazing too but I am trailing off topic. LOL. So I told Deetra are good news and she was thrilled for us :). I love my JRA family because of this, even though their children may not be doing well, they are happy for the familes who have children that are, and we all go through the ups and downs TOGETHER. Oh and I firmly believe once a member of the JRA family, ALWAYS a member. So after I told Deetra the news, she introduced me to Tiffany, some one that I already considered a friend even before we met today. I told her the news and like Deetra, she was happy for us.
We headed for the check out, made our appointment for October and then headed down to hitch a ride on the shuttle back to the medical plaza. We had a 3pm appointment with GI and were two hours early! We checked in there and didn't wait very long before being called back to a room. The doctor came back shortly there after and asked all kinds of questions. The basic stuff regarding Jackson's JA and then whether or not he's had tummy issues. The type of arthritis that he has can lead to inflammatory bowel disease. Everything checked out OK, he said he was OK with the labs that Dr. Modica was ordering, and then we checked out, making our next appointment for Feb., 8 months down the road! Yay!
Then it was off to the lab for blood work, and then home. Ahhhhh home. Of course that was AFTER my car crapping out on us. Thankfully we were only 4 miles from the Okahumpka Rest Stop/Plaza so we pulled over there and waited for a ride.
I am over joyed with the progress Jackson is making. I am saddened that other members of our JRA family have children who are not making the same progress. All of our children are different though and they all fight this a different way. But they FIGHT, and they don't let Arthur keep them down. Keep them in your prayers, and us too please. This can all take a turn in the opposite direction at any time.
We were called back to our room and waited for a bit before Dr. Modica came in. We weren't scheduled for an infusion but that can and has changed in a matter of minutes. Our friends Deetra and family and Tiffany and family were in the infusion room where their kiddos were getting their medicine. I made a mental note to make sure I stopped by there to say hello before we left.
Dr. Modica came in and began to check out Jackson, moving his wrists, knees, ankles, arms, legs, neck, pretty much every where. Guess what? The only place where he was hurting and/or swollen was in his wrists!!! NO WHERE ELSE! And we also get to lower his naproxin dose to once a day! I can't tell you how happy that made me, and Jackson too! His combo of drugs is working, and he seems to be getting better. She said that we may even be able to stop the Humira if is he still doing well in 4 months. That and if his labs are good.
We stopped by the infusion room [which is MUCH bigger now] and I found Deetra. Poor Sydney looked sad, broke my heart, that little girl is amazing. Wait, ALL the JRA kids are amazing, and their siblings are pretty amazing too but I am trailing off topic. LOL. So I told Deetra are good news and she was thrilled for us :). I love my JRA family because of this, even though their children may not be doing well, they are happy for the familes who have children that are, and we all go through the ups and downs TOGETHER. Oh and I firmly believe once a member of the JRA family, ALWAYS a member. So after I told Deetra the news, she introduced me to Tiffany, some one that I already considered a friend even before we met today. I told her the news and like Deetra, she was happy for us.
We headed for the check out, made our appointment for October and then headed down to hitch a ride on the shuttle back to the medical plaza. We had a 3pm appointment with GI and were two hours early! We checked in there and didn't wait very long before being called back to a room. The doctor came back shortly there after and asked all kinds of questions. The basic stuff regarding Jackson's JA and then whether or not he's had tummy issues. The type of arthritis that he has can lead to inflammatory bowel disease. Everything checked out OK, he said he was OK with the labs that Dr. Modica was ordering, and then we checked out, making our next appointment for Feb., 8 months down the road! Yay!
Then it was off to the lab for blood work, and then home. Ahhhhh home. Of course that was AFTER my car crapping out on us. Thankfully we were only 4 miles from the Okahumpka Rest Stop/Plaza so we pulled over there and waited for a ride.
I am over joyed with the progress Jackson is making. I am saddened that other members of our JRA family have children who are not making the same progress. All of our children are different though and they all fight this a different way. But they FIGHT, and they don't let Arthur keep them down. Keep them in your prayers, and us too please. This can all take a turn in the opposite direction at any time.
7.03.2010
Just a quick update
Never take the good things in your life for granted. It's a hard lesson to learn but one I am trying my best to embrace.
Jackson is doing well. So well he is forgetting to take his twice daily naproxen dose. We are always reminding him. He wants to stop taking it. We go back to the swamp [Gainesville - Home of the Gators!!] on Weds. the 7th. I plan on asking if we can at the very least lower the amount he takes.
We have learned that when things are going well with him, to rejoice. Some families know when a flare will happen, we don't. It can strike at any moment. So while he is well, we smile and be very thankful.
I'll update Weds. night, after we get home and get settled in.
Jackson is doing well. So well he is forgetting to take his twice daily naproxen dose. We are always reminding him. He wants to stop taking it. We go back to the swamp [Gainesville - Home of the Gators!!] on Weds. the 7th. I plan on asking if we can at the very least lower the amount he takes.
We have learned that when things are going well with him, to rejoice. Some families know when a flare will happen, we don't. It can strike at any moment. So while he is well, we smile and be very thankful.
I'll update Weds. night, after we get home and get settled in.
6.21.2010
"Missing"
*This blog is not about JA rather it is about how scary our afternoon was. I simply needed to get it out*
Have you ever thought about how you would feel should your child go "missing"? You watch the news and you hear about missing kids and your heart sinks because you think to yourself "I have no idea how I would ever react should that happen to my family". Today I got to learn exactly how I would react.
Jackson is going to Summer Reading Camp at his school this year. I take him in the morning and he rides the bus home. I figured it was perfect for him to know what things will be like come August when school is back in session and Shawn is at a different school. When school is in session, the kids are usually home about 25-30 min. after they are released and the bus stop is two streets down. So today, the first day of reading camp, I figured the same. They are released at 1:25 so he should be dropped off two streets down from the house 25-30 min. later right? Wrong.
2pm rolls around and nothing. No bus, no Jackson, nothing. I was OK at that point because a storm had just went through so I figured wet roads, crappy drivers, later drop off time. At about 2:15 I called the school. I was told the busses were running late do to some mix ups but she took my name, Jackson's name, my number and then asked me what bus number he rode. Ummm I have no idea because I was never told that information!! She said no problem, that she could get the bus number and she would call me back. 15 min later, at 2:30, Jackson was still not home and she had not called me back.
I called the school again, this time my voice was less calm and I was going into panic mode. A different woman answers the phone and asks me to hold on because she is going to call transportation to she what she can find out. She came back on the line TWICE and asked me if Jackson was home yet, I said no both times and we could both hear the worry in each others voices now. The third time she came back on the phone it wasn't her but a different woman who asked if she could call me back. What was I going to say? No? I said ok and began to pace my front yard. I called my mom in law and that helped a bit.
My child was over an hour late at this point and NO ONE knew where he was. I kept getting "he has to be on the bus" but no one knew that for sure. All those thoughts crept into my head, what if he is hurt? What is he has been kidnapped? WHERE IS HE?! 3pm, give or take, and the school calls me back. He is on the bus, and bus driver missed some stops but she is working her way back. I let out THE biggest sigh of relieve. I called my mom in law back and told her he was accounted for and I would call when he was standing infront of me.
3:15pm my cell rings again and this time it's the bus driver herself. She is on 436 by the Chuck -e- Cheese and wants to know how to get to our house. Are you SERIOUS?!?!?!?! So calmly I give her directions and when I get to the part where I tell her to turn down the street to get to our street she says "We were over there, I dropped off a student right there". So I said well here's the thing, I was never told what bus number let alone WHERE THE STOP WOULD BE! Jackson and I both assumed that the stop would be where it normally is and that I had told Jackson his brother would meet him there. She says ok, that she is sorry and she will drop him off at the stop where she dropped off the other student.
I called the school back and started to tell the office staff that he was on his way home and then I was asked to hold because the asst. principal wanted to speak with me. Turns out he was about a second away from calling Longwood PD because he felt that transportation was dragging their feet on the whole thing. I explained everything to him and he apologized over and over again. Then he asks if the bus driver is dropping him off at the bus stop or the school, I said at the bus stop and he said that transportation told him that she would be dropping him off at the school. I told him that if that happened to call me, I would come get him, and then he asked for a phone call should the bus driver drop him off at the bus stop.
Shawn and I then went to the bus stop and waited for Jackson to get there. 4pm he was safe in my car, two and a half hours AFTER he was released from school. That was the longest 2 and 1/2 hours of my life. The not knowing was horrible. Oh and come to find out, when the bus driver stopped at the bus stop Jackson got upset and said he didn't know how to get home from there. So the bus driver decided to just take him with her and finish out the route. Why she didn't use her cell phone to call her manager and let her/him know of the situation is beyond me.
In the end, he made it home, safe and sound, but believe me when I say that I NEVER want to feel that level of worry again.
Have you ever thought about how you would feel should your child go "missing"? You watch the news and you hear about missing kids and your heart sinks because you think to yourself "I have no idea how I would ever react should that happen to my family". Today I got to learn exactly how I would react.
Jackson is going to Summer Reading Camp at his school this year. I take him in the morning and he rides the bus home. I figured it was perfect for him to know what things will be like come August when school is back in session and Shawn is at a different school. When school is in session, the kids are usually home about 25-30 min. after they are released and the bus stop is two streets down. So today, the first day of reading camp, I figured the same. They are released at 1:25 so he should be dropped off two streets down from the house 25-30 min. later right? Wrong.
2pm rolls around and nothing. No bus, no Jackson, nothing. I was OK at that point because a storm had just went through so I figured wet roads, crappy drivers, later drop off time. At about 2:15 I called the school. I was told the busses were running late do to some mix ups but she took my name, Jackson's name, my number and then asked me what bus number he rode. Ummm I have no idea because I was never told that information!! She said no problem, that she could get the bus number and she would call me back. 15 min later, at 2:30, Jackson was still not home and she had not called me back.
I called the school again, this time my voice was less calm and I was going into panic mode. A different woman answers the phone and asks me to hold on because she is going to call transportation to she what she can find out. She came back on the line TWICE and asked me if Jackson was home yet, I said no both times and we could both hear the worry in each others voices now. The third time she came back on the phone it wasn't her but a different woman who asked if she could call me back. What was I going to say? No? I said ok and began to pace my front yard. I called my mom in law and that helped a bit.
My child was over an hour late at this point and NO ONE knew where he was. I kept getting "he has to be on the bus" but no one knew that for sure. All those thoughts crept into my head, what if he is hurt? What is he has been kidnapped? WHERE IS HE?! 3pm, give or take, and the school calls me back. He is on the bus, and bus driver missed some stops but she is working her way back. I let out THE biggest sigh of relieve. I called my mom in law back and told her he was accounted for and I would call when he was standing infront of me.
3:15pm my cell rings again and this time it's the bus driver herself. She is on 436 by the Chuck -e- Cheese and wants to know how to get to our house. Are you SERIOUS?!?!?!?! So calmly I give her directions and when I get to the part where I tell her to turn down the street to get to our street she says "We were over there, I dropped off a student right there". So I said well here's the thing, I was never told what bus number let alone WHERE THE STOP WOULD BE! Jackson and I both assumed that the stop would be where it normally is and that I had told Jackson his brother would meet him there. She says ok, that she is sorry and she will drop him off at the stop where she dropped off the other student.
I called the school back and started to tell the office staff that he was on his way home and then I was asked to hold because the asst. principal wanted to speak with me. Turns out he was about a second away from calling Longwood PD because he felt that transportation was dragging their feet on the whole thing. I explained everything to him and he apologized over and over again. Then he asks if the bus driver is dropping him off at the bus stop or the school, I said at the bus stop and he said that transportation told him that she would be dropping him off at the school. I told him that if that happened to call me, I would come get him, and then he asked for a phone call should the bus driver drop him off at the bus stop.
Shawn and I then went to the bus stop and waited for Jackson to get there. 4pm he was safe in my car, two and a half hours AFTER he was released from school. That was the longest 2 and 1/2 hours of my life. The not knowing was horrible. Oh and come to find out, when the bus driver stopped at the bus stop Jackson got upset and said he didn't know how to get home from there. So the bus driver decided to just take him with her and finish out the route. Why she didn't use her cell phone to call her manager and let her/him know of the situation is beyond me.
In the end, he made it home, safe and sound, but believe me when I say that I NEVER want to feel that level of worry again.
5.17.2010
Lucky
Juvenile Arthritis (JA): a broad term that encompasses all types of chronic arthritis in children including all the subtypes of JRA and JIA, arthritis associated with SLE, arthritis associated with dermatomyositis, reactive arthritis, etc.
Juvenile Rheumatoid Arthritis (JRA): The American College of Rheumatology (ACR) classification criteria that were developed and validated in 1972 by the ACR There are three subtypes within this classification: oligoarticular (pauciarticular), polyarticular and systemic with further divisions within the first two subtypes. Reference: Brewer et al, Bull Rheum Dis 23: 712, 1972.
Juvenile Idiopathic Arthritis (JIA): Classification criteria proposed by the International League of Associations for Rheumatology (ILAR) task force in 1995 that has seven subtypes: systemic, oligoarticular-persistent, oligoarticular-extended, polyarticular-RF (rheumatoid factor) negative, polyarticular-RF positive, enthesitis-related arthritis, psoriatic arthritis, and other (undifferentiated) arthritis. Reference: Fink CW, J Rheumatol 22: 1566, 1995
-definitions copied and pasted from www.arthritis.org.
Asking yourself why the title "Lucky"? Let me explain.
My son is not 100% healthy. Oh he appears to be from the outside. On the outside, he looks like a regular child, a "normal" 7 year old boy. Too many people think that he is healthy because he runs, jumps, plays, and moves around like a healthy child. Guess what folks? He is only able to do those things because of the meds he is on. Miss a dose of the methotrexate, trust me, he'll pay for that in a day or two. I know because he has missed a dose and 2 days later he couldn't walk because of the flare up. Did you know that methotrexate is CHEMOTHERAPY? Yup. It is. And Humira? The other shot he gets on Friday's? Check out this link http://www.humira.com/JuvenileIdiopathicArthritis/Default.aspx . Not into reading all about it? No worries, let me point out the main thing I want to share with you, "Humira is a TNF-blocker medicine that can lower the ability of your immune system to fight infections." Oh and this too, "There have been cases of unusual cancers in children and teenagers using TNF-blocker medicines." CANCER. Did you see that? It said C.A.N.C.E.R. Patrick and I are giving our son something that can cause CANCER, oh and not just cancer but UNUSUAL cancers. Scary isn't it? Glad you aren't in my shoes? Or Patrick's? Or even Jackson's? Trust me when I say that if there was something else out there that he could take that would work just as well, he would be on it. The sad truth though is that there isn't.
But Jackson is lucky. He is lucky because we have found what works for him. He is lucky because his "cocktail" of meds has helped him to be able to run, jump, play, and be "normal" like any other 7 year kid. He is lucky because he doesn't have to go to Gainesville every week, every 2 weeks, or even every 4 weeks. He is lucky because the last time we were there, they took his blood work and every thing came back good. That means that his levels were where they should be, despite ALL the meds he is on. Yes, Jackson is lucky and after reading about what his friends with JA are going through, I am thanking God right now.
Jackson has a school that understands and "gets it". I haven't experienced what other parents in my JA family have. I haven't had to miss work like so many moms and dads because of a bad flare, one so bad the child can't move because it hurts so much. I haven't had to explain how my child is perfectly "fine" one day and damn near inmobile the next. Jackson has not had to use crutches or a wheelchair.
JA family, I love each and every one of you. I pray that your children, and mine, will one day have a cure. I pray that the meds don't cause more harm than good for our children.
I am here for all of you.
And in the meantime, I will continue to thank God (and my own personal angel) that Jackson is as "healthy" as he is today.
-Also, please note that this blog is not a "rub it in your face" kinda thing. There is a part of me that feels bad that my child is doing so well when so many others are not. WilmaSue told me to never feel that, be thankful for how well he is doing. I want all his friends to feel the way he does everyday. I want all his friends to be able to run and play and not have a flare the next day. I realize how "lucky" we are that he is feeling good, and like WilmaSue told me, I am thankful.
Juvenile Rheumatoid Arthritis (JRA): The American College of Rheumatology (ACR) classification criteria that were developed and validated in 1972 by the ACR There are three subtypes within this classification: oligoarticular (pauciarticular), polyarticular and systemic with further divisions within the first two subtypes. Reference: Brewer et al, Bull Rheum Dis 23: 712, 1972.
Juvenile Idiopathic Arthritis (JIA): Classification criteria proposed by the International League of Associations for Rheumatology (ILAR) task force in 1995 that has seven subtypes: systemic, oligoarticular-persistent, oligoarticular-extended, polyarticular-RF (rheumatoid factor) negative, polyarticular-RF positive, enthesitis-related arthritis, psoriatic arthritis, and other (undifferentiated) arthritis. Reference: Fink CW, J Rheumatol 22: 1566, 1995
-definitions copied and pasted from www.arthritis.org.
Asking yourself why the title "Lucky"? Let me explain.
My son is not 100% healthy. Oh he appears to be from the outside. On the outside, he looks like a regular child, a "normal" 7 year old boy. Too many people think that he is healthy because he runs, jumps, plays, and moves around like a healthy child. Guess what folks? He is only able to do those things because of the meds he is on. Miss a dose of the methotrexate, trust me, he'll pay for that in a day or two. I know because he has missed a dose and 2 days later he couldn't walk because of the flare up. Did you know that methotrexate is CHEMOTHERAPY? Yup. It is. And Humira? The other shot he gets on Friday's? Check out this link http://www.humira.com/JuvenileIdiopathicArthritis/Default.aspx . Not into reading all about it? No worries, let me point out the main thing I want to share with you, "Humira is a TNF-blocker medicine that can lower the ability of your immune system to fight infections." Oh and this too, "There have been cases of unusual cancers in children and teenagers using TNF-blocker medicines." CANCER. Did you see that? It said C.A.N.C.E.R. Patrick and I are giving our son something that can cause CANCER, oh and not just cancer but UNUSUAL cancers. Scary isn't it? Glad you aren't in my shoes? Or Patrick's? Or even Jackson's? Trust me when I say that if there was something else out there that he could take that would work just as well, he would be on it. The sad truth though is that there isn't.
But Jackson is lucky. He is lucky because we have found what works for him. He is lucky because his "cocktail" of meds has helped him to be able to run, jump, play, and be "normal" like any other 7 year kid. He is lucky because he doesn't have to go to Gainesville every week, every 2 weeks, or even every 4 weeks. He is lucky because the last time we were there, they took his blood work and every thing came back good. That means that his levels were where they should be, despite ALL the meds he is on. Yes, Jackson is lucky and after reading about what his friends with JA are going through, I am thanking God right now.
Jackson has a school that understands and "gets it". I haven't experienced what other parents in my JA family have. I haven't had to miss work like so many moms and dads because of a bad flare, one so bad the child can't move because it hurts so much. I haven't had to explain how my child is perfectly "fine" one day and damn near inmobile the next. Jackson has not had to use crutches or a wheelchair.
JA family, I love each and every one of you. I pray that your children, and mine, will one day have a cure. I pray that the meds don't cause more harm than good for our children.
I am here for all of you.
And in the meantime, I will continue to thank God (and my own personal angel) that Jackson is as "healthy" as he is today.
-Also, please note that this blog is not a "rub it in your face" kinda thing. There is a part of me that feels bad that my child is doing so well when so many others are not. WilmaSue told me to never feel that, be thankful for how well he is doing. I want all his friends to feel the way he does everyday. I want all his friends to be able to run and play and not have a flare the next day. I realize how "lucky" we are that he is feeling good, and like WilmaSue told me, I am thankful.
4.29.2010
JA in pictures
This is everything that Jackson takes. The only thing not prescribed are the gummy vitamins. Why take those? Well, when you're on things like methotrexate and humira, you tend to not have much of an immune system. The gummy vitamins have added immune boosters in them.
4.28.2010
Hardcore Truths
I have something to admit.
I have absolutely no idea what Jackson's meds cost. Nor do I have a clue what each visit to Dr. M costs. And the infusions? Yup, you guessed it, no clue what that runs either.
I do however know what it costs in gas, tolls, parking fees, and emotions. I know what kind of toll is takes on my child. I see the fear in his eyes every Friday, because Friday is shot day. It's heartbreaking to know that you're child will never be "normal", but really, what is normal? Normal for us is having an 11 yr old son who is healthy, and yes, mouthy, but he's a pre-teen and we're working on it. We have a new normal where our 7 yr old son is concerned. Every morning he takes his 10 ml of Naproxen, his gummy vitamin, and his Prilosec and every night he takes another 10 ml of Naproxen and another gummy vitamin. Every Friday he mentally prepares himself for his shots, while his father and I get everything ready. Humira shot comes out of the fridge about 45 min before shot time, it's cold and if it stays cold, it hurts far worse than any shot should. The cream gets put on the back of the arms, wrapped with saran wrap and left alone for about 45 min. My husband gets the methotrexate shot ready and then after that 45 min is up, it's go time.
Jackson may cry, he may scream, he may run and hide, but deep down, he knows that without these shots, he will be in pain. He knows his joints will swell, he knows exactly how he'll feel. Children are amazing beings.
Please understand that I am not complaining nor am I trying to be a Debbie Downer, I simply want you to know what it's like for a family with a child that suffers with arthritis. But aside from the medicine box that sits on our kitchen counter, the Humira box in the fridge, the bag of needles in the cabinet, and the sharps box under the sink....you would never know that Jackson "suffers" from JIA. I use suffer in quotations because in all honesty Jackson isn't suffering. I will not utter the R word because that may jinx the possibility of that happening soon . But that isn't easy either because once the R word is used, Jackson will then start the process of being weaned off everything he currently takes and that can be just as hard on his body as taking the meds in the first place. So while he is currently feeling good, I know that can change in a matter of minutes.
I bet you're wondering why I don't know the cost of the meds, the doctor visits, or the infusions. Here's another hard truth for you, my family is considered low income, and because of that, Jackson is on Medicaid/CMS and they cover everything. I am not ashamed and I am not naive to what this all could be costing my family. I am forever grateful that my child even has insurance to begin with.
This journey we're on has good days and bad days but ya know what? I wouldn't trade in this life for anything in the world. We have our hardships, we are not financially stable (and really, who is?), I can't buy our children the latest and greatest in toys or electronics but I can love them unconditionally. I can teach them to love in that same way. I can steer them in the right direction and know that along the way they will make mistakes, and I can hope that they can learn from those mistakes. I can be here when they need me and when they think they don't. I can be their mother, pure and simple.
We're together in this journey, forever and always.
I have absolutely no idea what Jackson's meds cost. Nor do I have a clue what each visit to Dr. M costs. And the infusions? Yup, you guessed it, no clue what that runs either.
I do however know what it costs in gas, tolls, parking fees, and emotions. I know what kind of toll is takes on my child. I see the fear in his eyes every Friday, because Friday is shot day. It's heartbreaking to know that you're child will never be "normal", but really, what is normal? Normal for us is having an 11 yr old son who is healthy, and yes, mouthy, but he's a pre-teen and we're working on it. We have a new normal where our 7 yr old son is concerned. Every morning he takes his 10 ml of Naproxen, his gummy vitamin, and his Prilosec and every night he takes another 10 ml of Naproxen and another gummy vitamin. Every Friday he mentally prepares himself for his shots, while his father and I get everything ready. Humira shot comes out of the fridge about 45 min before shot time, it's cold and if it stays cold, it hurts far worse than any shot should. The cream gets put on the back of the arms, wrapped with saran wrap and left alone for about 45 min. My husband gets the methotrexate shot ready and then after that 45 min is up, it's go time.
Jackson may cry, he may scream, he may run and hide, but deep down, he knows that without these shots, he will be in pain. He knows his joints will swell, he knows exactly how he'll feel. Children are amazing beings.
Please understand that I am not complaining nor am I trying to be a Debbie Downer, I simply want you to know what it's like for a family with a child that suffers with arthritis. But aside from the medicine box that sits on our kitchen counter, the Humira box in the fridge, the bag of needles in the cabinet, and the sharps box under the sink....you would never know that Jackson "suffers" from JIA. I use suffer in quotations because in all honesty Jackson isn't suffering. I will not utter the R word because that may jinx the possibility of that happening soon . But that isn't easy either because once the R word is used, Jackson will then start the process of being weaned off everything he currently takes and that can be just as hard on his body as taking the meds in the first place. So while he is currently feeling good, I know that can change in a matter of minutes.
I bet you're wondering why I don't know the cost of the meds, the doctor visits, or the infusions. Here's another hard truth for you, my family is considered low income, and because of that, Jackson is on Medicaid/CMS and they cover everything. I am not ashamed and I am not naive to what this all could be costing my family. I am forever grateful that my child even has insurance to begin with.
This journey we're on has good days and bad days but ya know what? I wouldn't trade in this life for anything in the world. We have our hardships, we are not financially stable (and really, who is?), I can't buy our children the latest and greatest in toys or electronics but I can love them unconditionally. I can teach them to love in that same way. I can steer them in the right direction and know that along the way they will make mistakes, and I can hope that they can learn from those mistakes. I can be here when they need me and when they think they don't. I can be their mother, pure and simple.
We're together in this journey, forever and always.
4.26.2010
Remember to breath.
The walk/peaceful protest is THIS Sat! I have SO much that I want to do. I wanted to make shirts but sadly, I don't think it's possible with the short time frame, that and the lack of funds doesn't help. I want to make a sign or two. I still think that's possible, Pat gets paid Thursday and the kids and I can work on it Friday night, right? RIGHT! Oh and the snack baggies, and the Apple Jacks, and the facts to go on the baggies. I refuse to feel over whelmed though.
I'm excited for Sat. I'm excited to see all of my JA/Mom Squad family. We don't see each other often enough. Danielle I wish that you're walk wasn't the same day as ours, it would be great to see you again!!
Jackson is still feeling good. He went camping this past weekend with some of the boys from the cub scout pack, his dad, brother, Uncle, and cousin. The last time he went camping he couldn't enjoy it all that much because he was in pain but not yet diagnosed. I was not camping with them so I was happy to hear that he had a good time!!
Speaking of the walk, Team Apple Jacks We are SO close to our goal!! Help us out if you can!!
I'm excited for Sat. I'm excited to see all of my JA/Mom Squad family. We don't see each other often enough. Danielle I wish that you're walk wasn't the same day as ours, it would be great to see you again!!
Jackson is still feeling good. He went camping this past weekend with some of the boys from the cub scout pack, his dad, brother, Uncle, and cousin. The last time he went camping he couldn't enjoy it all that much because he was in pain but not yet diagnosed. I was not camping with them so I was happy to hear that he had a good time!!
Speaking of the walk, Team Apple Jacks We are SO close to our goal!! Help us out if you can!!
4.22.2010
Florida Mom Squad
Having a child with JA has allowed me to meet some wonderful people. When your son or daughter is diagnosed with JA, you feel many emotions. One of this biggest ones Patrick and I felt was fear and the sense of being alone in this. When your told that your child has a disease that will more than likely affect him or her for the rest of their lives, you go numb. At least I did. I was in shock, and I was sad for my son.
Through the magic of Facebook, I came to know some very strong people. I also became a member of the Mom Squad. The support that we give each other is like nothing I have ever seen before. When one child hurts, we all hurt, and when the JA kids are doing well, we all rejoice together, like a family.
Patrick and I are no longer alone in this journey. We have an incredible support system of not only traditional family and friends but also the Arthritis Foundation and the Mom Squad family. Without them, we'd still be alone in this.
My little blog that I decided to have is about to gain some big time attention and I couldn't be more excited! Having said that, Welcome new readers! I do hope that you will click the follow me button and join us on our journey!
Through the magic of Facebook, I came to know some very strong people. I also became a member of the Mom Squad. The support that we give each other is like nothing I have ever seen before. When one child hurts, we all hurt, and when the JA kids are doing well, we all rejoice together, like a family.
Patrick and I are no longer alone in this journey. We have an incredible support system of not only traditional family and friends but also the Arthritis Foundation and the Mom Squad family. Without them, we'd still be alone in this.
My little blog that I decided to have is about to gain some big time attention and I couldn't be more excited! Having said that, Welcome new readers! I do hope that you will click the follow me button and join us on our journey!
4.21.2010
4.08.2010
What we've been up to.
Here in Armstrong Land we've been up to school and spring break! Jackson is still doing well. Thankfully!! We're also gearing up for the 2010 Arthritis Walk on May 1st! I plan on getting some snack size baggies, filling them with Apple Jacks, and sticking arthritis facts on each bag. Still need to figure out if we're going to make signs and shirts.
Short update, I know, but there really is nothing new to report!
Short update, I know, but there really is nothing new to report!
3.10.2010
Weds. March 10, 2010
Today we had our visit to Shands for Jackson's infusion and follow up appointment.
It went well, although he hates the IV. He always gest worked up about it :(
Once it's in though he's ok.
He got to play the Wii, something he always enjoys, lol.
Dr. Modica came in and we talked about how Jackson has been feeling. Since starting the Humira, he is doing SO well!
She checked out all the places he has been swollen in the past, along with other places he has not. His knees are still warm to the touch BUT he isn't swollen in the left and only slightly swollen in the right. His toes and fingers are doing well, but his ankles and wrists are still not 100%. He isn't bothered by any of this and I am leaning on the side of the Humira. We asked if it was possible to give him the injections in another place besides the back of his arms (He is bruising and Pat says it's getting harder to inject there). We're going to start giving him the injections in the leg, the fatty part, and alternating between the arms and legs. With that being said, we're to cont. all meds as prescribed.
Annnnnnd because he is doing so well and Dr. Modica is happy with where he is at, we aren't scheduled to go back until July, that's right people, 4 MONTHS from now! The only reason we'd go back sooner is if he flares up pretty bad or if his levels are still elevated when I call about them in a week. In that case, we'll go back in 4 weeks for another infusion. Pray for low levels!
While I am SUPER happy that Jackson is doing so well, I am sad that there are other children that are not doing so well. :( It makes me sad. It angers me. And I feel a bit guilty for being so happy about Jackson.
There is NO cure for this.
If you can, donate. Also, we're walking on May 1st, join our team if you can.
Our page for the walk
It went well, although he hates the IV. He always gest worked up about it :(
Once it's in though he's ok.
He got to play the Wii, something he always enjoys, lol.
Dr. Modica came in and we talked about how Jackson has been feeling. Since starting the Humira, he is doing SO well!
She checked out all the places he has been swollen in the past, along with other places he has not. His knees are still warm to the touch BUT he isn't swollen in the left and only slightly swollen in the right. His toes and fingers are doing well, but his ankles and wrists are still not 100%. He isn't bothered by any of this and I am leaning on the side of the Humira. We asked if it was possible to give him the injections in another place besides the back of his arms (He is bruising and Pat says it's getting harder to inject there). We're going to start giving him the injections in the leg, the fatty part, and alternating between the arms and legs. With that being said, we're to cont. all meds as prescribed.
Annnnnnd because he is doing so well and Dr. Modica is happy with where he is at, we aren't scheduled to go back until July, that's right people, 4 MONTHS from now! The only reason we'd go back sooner is if he flares up pretty bad or if his levels are still elevated when I call about them in a week. In that case, we'll go back in 4 weeks for another infusion. Pray for low levels!
While I am SUPER happy that Jackson is doing so well, I am sad that there are other children that are not doing so well. :( It makes me sad. It angers me. And I feel a bit guilty for being so happy about Jackson.
There is NO cure for this.
If you can, donate. Also, we're walking on May 1st, join our team if you can.
Our page for the walk
3.04.2010
Not doing enough
I am struggling to find the words to express how I am feeling. In the last week or so, I have had many people reach out to me. Mostly Moms of children who suffer with JA. And Tony of course :). I am grateful to have these people in my life now, even if only in the FB world. It pains me to see their posts of their children in pain, swollen, tired, and unable to be who they are, CHILDREN, because their having a bad flare. While these children are suffering, Jackson is not. In fact, and I know this is very naive of me to say, but Jackson looks and acts like any normal 7 yr old. I don't see any visible swelling [doesn't mean he isn't], he isn't complaining, and he is no more tired than his 11 yr old brother. Could he be in remission? Is that too good to be true? We have our infusion appt. and follow up next week, on the 10th, in G-ville and we'll know just how well he is doing. The humira in combination with the methotrexate seem to be working well for him.
In the mean time, there are walk meetings that I can not attend because cub scouts falls on the same night. I want to do more. I need to do more. But what? Am I the only one feeling this way? Have other moms felt this way too?
In the mean time, there are walk meetings that I can not attend because cub scouts falls on the same night. I want to do more. I need to do more. But what? Am I the only one feeling this way? Have other moms felt this way too?
2.26.2010
FYI
http://www.facebook.com/arthursangels
Jackson is the featured Face of Arthritis.
I can't wait to get more involved with the local chapter of the Arthritis Foundation!!
Jackson is the featured Face of Arthritis.
I can't wait to get more involved with the local chapter of the Arthritis Foundation!!
2.24.2010
Exciting things to come, I can feel it!!
I was recently, like yesterday!, introduced to a man named Tony Ward. Tony's official title is Community Development Director -Central Florida, Arthritis Foundation - Florida Chapter but I hope to one day soon call him my friend!
You see when Jackson was diagnosed with JA we were very overwhelmed. To be honest, I still feel that way some days. I can't speak for Patrick on that though. Anywho, I felt very alone. After our first appointment with Dr. Modica, I was lost in a world of medicine. Injections, liquids, pills, oh my! I wasn't sure what to do, or where to turn for help or guidance. My friend Jayme suggested that I find a local outlet for families that have children with arthritis. I already had the arthritis foundation website bookmarked on my laptop but I hadn't really looked at anything local. I even started a blog on blogger.com so that family and friends could follow our journey.
I started searching out groups here on FB and found a few, joined them, and left wall comments with my blog link, hoping that people would read it, and follow it, and maybe I could get some connections that way. And low and behold, I had an add request from a mom whose child has JA, only down fall, they live outta state. But I thought cool, some one that I can talk to about this that GETS it. Then just a few days ago, I got another add request from a mom and her family lives in Lakeland! Annnnnnnd they go to Shands too!! Well from there I was able to find the Arthur Itis FB page and that led me to Tony.
Tony and I were able to talk yesterday. Great things came from that talk. I am hoping to become involved in the mom squad, as Tony calls them. We're participating in the May 1st walk in Avalon Park and I am hoping to meet some of the moms I just added on FB
You see when Jackson was diagnosed with JA we were very overwhelmed. To be honest, I still feel that way some days. I can't speak for Patrick on that though. Anywho, I felt very alone. After our first appointment with Dr. Modica, I was lost in a world of medicine. Injections, liquids, pills, oh my! I wasn't sure what to do, or where to turn for help or guidance. My friend Jayme suggested that I find a local outlet for families that have children with arthritis. I already had the arthritis foundation website bookmarked on my laptop but I hadn't really looked at anything local. I even started a blog on blogger.com so that family and friends could follow our journey.
I started searching out groups here on FB and found a few, joined them, and left wall comments with my blog link, hoping that people would read it, and follow it, and maybe I could get some connections that way. And low and behold, I had an add request from a mom whose child has JA, only down fall, they live outta state. But I thought cool, some one that I can talk to about this that GETS it. Then just a few days ago, I got another add request from a mom and her family lives in Lakeland! Annnnnnnd they go to Shands too!! Well from there I was able to find the Arthur Itis FB page and that led me to Tony.
Tony and I were able to talk yesterday. Great things came from that talk. I am hoping to become involved in the mom squad, as Tony calls them. We're participating in the May 1st walk in Avalon Park and I am hoping to meet some of the moms I just added on FB
2.22.2010
No news is good news, right?
In this case yes! No news is indeed good news. It has been over a month since my last post and I apologize for that. Jackson has staredt the Humira and along with everything else he is on, he is doing so well! I can not express how much it makes me smile to see that he can run, walk, skip, and play without pain. He knows his limits but sometimes needs to be reminded to slow down otherwise he will feel it the next few days. I won't dare imply or even think that he is in any kind of remmission though, we have a follow up and infusion appointment on March 10th and then I will be able to talk about what stage he is.
If you aren't following this blog, do it! =)
I promise to update more often.
If you aren't following this blog, do it! =)
I promise to update more often.
1.15.2010
Dropping one, picking up another
Weds. we headed to Gainseville, just Jackson and I, for another infusion and a follow up appointment. (If you are wondering what an infusion is, here is the link to the definition, http://www.merriam-webster.com/dictionary/infusion, look at number 3.)
To say the infusion room was busy would be an understatement!! Our chair was ready when we got there though so we sat down and waited. Because of the anticipation of the IV, Jackson was working himself up into a fit. He hates needles. He get Solu-Medrol in his IV for about an hour. Once the needle is in, and the medicine is flowing, we're all good.
Dr. Elder and Heather came in to see how he was doing, check out his joints, and talk with me about the possibility of adding a third medicine to his regime. Heather and I had talked about this the previous week because she had called to tell me about the some blood work and the results. The type of arthritis he has, polyarticular juvenile idiopathic arthritis (JIA), can also cause him to have inflammation of the eye and bowels. One of us, either Patrick or myself, carries the gene. My guess is me.
Upon looking at Jackson's toes, 2 of which looked like sausages, and his right knee, which was still very swollen and warm, the decision was made to introduce Humira, a pre-measured injectable. So that makes TWO injections a week. Oh and the Humira.....yeah it stings. So we also have Lidoderm patches we put on his arm 30 min. before the scheduled injection. He is no longer taking the steroid but we have it just in case he flares up bad.
We also had an appointment with GI. He had diarreha way back in the beggining of November and because of his diagnosis we needed to meet with a GI doctor to discuss possible Crones Disease. Good news there, we're A-OK in that department. That doesn't mean that he can't or won't develop it some time in the future but for now, he's fine. The doc did say that he didn't want him taking Zantac anymore, it's just not strong enough for the amount of Naproxin he takes daily, 10 mL. He wrote us a script for Prilosec and he only has to take that once a day.
We go back in 6-8 weeks for another infusion and follow up and in 6 mths it's back to GI.
Today is a bad day. =( It's Friday and he did too much yesterday. The day after an infusion is ALWAYS good for Jackson, he can walk better, even run a little, and because he feels good he does too much and then pays for it the day after, Friday. Today he can barely walk and it breaks my heart and frustrates me all at the same time.
Patrick and I have decided that in May, May 1st to be exact, we will be participating in the Walk for Arthritis. I am going to be putting together a team and I am hoping to raise not only awareness for this autoimmune disease but money as well. A cure, that is what we need. If you would like to walk with us and help raise awareness, please, let me know!
To say the infusion room was busy would be an understatement!! Our chair was ready when we got there though so we sat down and waited. Because of the anticipation of the IV, Jackson was working himself up into a fit. He hates needles. He get Solu-Medrol in his IV for about an hour. Once the needle is in, and the medicine is flowing, we're all good.
Dr. Elder and Heather came in to see how he was doing, check out his joints, and talk with me about the possibility of adding a third medicine to his regime. Heather and I had talked about this the previous week because she had called to tell me about the some blood work and the results. The type of arthritis he has, polyarticular juvenile idiopathic arthritis (JIA), can also cause him to have inflammation of the eye and bowels. One of us, either Patrick or myself, carries the gene. My guess is me.
Upon looking at Jackson's toes, 2 of which looked like sausages, and his right knee, which was still very swollen and warm, the decision was made to introduce Humira, a pre-measured injectable. So that makes TWO injections a week. Oh and the Humira.....yeah it stings. So we also have Lidoderm patches we put on his arm 30 min. before the scheduled injection. He is no longer taking the steroid but we have it just in case he flares up bad.
We also had an appointment with GI. He had diarreha way back in the beggining of November and because of his diagnosis we needed to meet with a GI doctor to discuss possible Crones Disease. Good news there, we're A-OK in that department. That doesn't mean that he can't or won't develop it some time in the future but for now, he's fine. The doc did say that he didn't want him taking Zantac anymore, it's just not strong enough for the amount of Naproxin he takes daily, 10 mL. He wrote us a script for Prilosec and he only has to take that once a day.
We go back in 6-8 weeks for another infusion and follow up and in 6 mths it's back to GI.
Today is a bad day. =( It's Friday and he did too much yesterday. The day after an infusion is ALWAYS good for Jackson, he can walk better, even run a little, and because he feels good he does too much and then pays for it the day after, Friday. Today he can barely walk and it breaks my heart and frustrates me all at the same time.
Patrick and I have decided that in May, May 1st to be exact, we will be participating in the Walk for Arthritis. I am going to be putting together a team and I am hoping to raise not only awareness for this autoimmune disease but money as well. A cure, that is what we need. If you would like to walk with us and help raise awareness, please, let me know!
1.06.2010
Time
It seems that time is all that is needed right now. Since being prescribed 4 meds. Jackson is doing better. Some days are better than others, he'll wake up with a sore knee, or currently he has two swollen fingers, but it's 100% better than a few weeks ago.
We go back to G-ville next Weds, the 13th, for a follow up appointment and another infusion. We also have an appointment with GI in order to rule out crohns disease .
Nothing else to report.
We go back to G-ville next Weds, the 13th, for a follow up appointment and another infusion. We also have an appointment with GI in order to rule out crohns disease .
Nothing else to report.
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