Prepared.....Or not.

In 9 days we head to G-ville for Jackson's rhuemy and GI appointments.
I'm not prepared.
I am admitting that.
But I am hoping that within the next 8 days, I get uber prepared.
I need to make a list.
A list of questions.
But what do I ask?
I'm lost.
We've been on this journey for over a year now and I am still lost.
Is he flaring?
Where?
Do we need to go back to weekly methotrexate?
His knees sometimes hurt 2-3 days before the bi-weekly metho shot.
His eyes are ok.
He needs new glasses.
What is ANA?
Will they let me see his chart?
Can I get a copy of it?
We got the inserts for his sneakers.
He still needs NEWer sneakers.
Is he in a medical type of remission?
What should I ask?
What do YOU ask YOUR child's rheumy?
Help.

Can I have a copy of that?

We go back to Gainesville next month. I'm sitting here reading the posts within the Arthritis group I'm on via FB and wondering if I am not asking the right questions when we are there. I'm also wondering if I should ask for copies of Jackson's records, I know those will cost me.

I'm just wondering if I don't know all the ins and outs of his arthritis. Like I know it's auto immune. And I know the type. But when he got that rash, that's when I began to wonder if I'm doing something wrong or not asking enough. Like, should I have called when that rash was there? Or was going to the pediatrician enough. I mean it's gone now. I will be mentioning it next month though.

We have been within this new world for over a year now and when I read other blogs I think to myself, why don't I know all that info about my kid?

So my question to all of you is this, what are some things I should know about my son and his arthritis? If you would, email me your list of must have questions and must have thing to know to my email @ courtney.amber79@gmail.com.

I plan on printing off your helpful lists so that when we go back to G-ville next month, we'll be more prepared than ever!

Thank you in advance.

Prayer

I am not a religious person. I did not grow up going to church every Sunday with my family. In fact, I can count on one hand the number of times I have been in a church. I wasn't even married in a church, I was married in an alley, out side of a bar, NEXT to a big beautiful cathedral. I was however married by a minister.

Having said all that, one may think I do not believe in God. And to be 100% honest with you, my followers and blog readers, I am not sure what it is I believe in. Do I believe in a high power? Yes. Do I believe it to be our Lord and Savior Jesus Christ? Maybe. Do I believe there is a Heaven? I believe there is something. Do I believe in the power of prayer? 100% without a doubt yes. When asked for prayers for ailing friends, family, and others, I most certainly say a little prayer to myself to heal those who are hurting and/or suffering. When my Aunt was dying I prayed A LOT. I made bargains, I pleaded, and I begged. And when my Aunt passed away, I was angry and mad and I felt let down. It took me a long time to move on from her passing, and some days, I don't think I have moved on 100% but deep down I don't want to. When going through pictures, I fight back the tears upon seeing her smiling face looking back at me. I am no longer angry that she is gone because I know that she is no longer in pain. I know that she is watching over my family and when I see a rainbow, it's her letting me know she is there.

This week has been a trying one for my JA Family. Many prayer requests have been made. I have been forced to recognize my blessings. Jackson is doing great. I have not seen any physical signs of joint swelling nor is he complaining of anything. Medicated remission is what some may choose to call this. I have been forced to realize that even though he is still on Humira, Naproxin, Methotrexate, Leucavorin, and Prilosec he is doing well and it's BECAUSE of all that he takes. I don't like that he takes things that suppress his immune system, and I hate that he is on low dose chemo but the fact remains that these drugs are helping him.

Having a child with a chronic illness makes you understand that you have to take the good with the bad. Jackson has not had an infusion is about a year. When we make our trips to Shands, it's to see his doctors, not to have an infusion. Do I know that could all change at any moment? You bet I do. And that is why I count my blessings, and say my prayers for the JA families that are hurting right now and always.

Julie, Rochelle, Heidi, Lana, WilmaSue, Tiffany, Deetra and any momma I may have forgotten, I love you, your children, and your families and I may not comment on what you are going through right now with your children, I am thinking of you and praying. This week, and in previous weeks, things for you guys have been rough. For that I am sorry. To my mommas with kiddos that are doing well, like Jackson, I love you guys too!!

Too many people think arthritis isn't a big deal, too many blow it off like it's nothing. My JA family and I are here to tell you otherwise..........

And the list just keeps getting longer

Have you noticed anything different about my blog?

If you look to the right---------------------->

You will see that my blog list of Arthritis families has gotten longer. And while I am happy to meet you new people, I do not like the circumstances by which we have found each other. :( Juvenile Arthritis is a very real disease. I do not feel that it receives enough attention. 300,000 children will tell you that it hurts, and that it's scary. Those same 300,000 children will amaze you with their strength and their willingness to fight.

The next time some one asks me who MY hero is I will tell them that it's all of your children, and my child.

PS. I hope to be giving my blog a "makeover" of sorts. So if you come back often you may see a "mess". Pardon the dust for a bit, please, and thank you!

Spiraling out of......control?

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. 

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.)

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!