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. 

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!!

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! 

Remember those levels I mentioned?

They were low!

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!

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

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?