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.
11.19.2010
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.
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