May is for....

...Arthritis Awareness Month. Did you know that? Unless you are someone you know is impacted by this dreadful disease, I bet you didn't. Did you also know that there are more than 100 forms of arthritis? Bet you didn't. Did you know that Juvenile Arthritis is an AUTOIMMUNE DISEASE? Bet you didn't. Did you know that our kids (and lots of adults) have to take low dose chemotherapy as part of their treatment? Bet you didn't. Did you know that many of our kids hate day to day life because this disease makes them so different? Bet you didn't. For instance, a field trip means having to wear long sleeves, long pants, a wide brimmed hat AND sunscreen while your kid wears shorts a tee shirt and not a care in the world. Our kids have to miss school because your kid didn't get his vaccinations, so now there is an out break of chicken pox at school. Thanks. Our kids caught your kids cold because you felt he wasn't "sick enough" to keep him home from school. Now our kid has pneumonia. Did you know that the very drugs that treat our children, also make them sick? Bet you didn't. Or how about this, did you know that every Friday night I have to hold my baby girls hand while Daddy gives her her injections and she screams, "Please don't do this! WHY are you doing this to me?!" I bet....you didn't.
That video up there is of a sweet, BRAVE little girl named Jordan. Her family calls her Peanut because she is so small. So small, yet still SO brave! Oh yeah, did you know that this disease can stunt a child's growth? Bet you didn't.

And in other news...

Jenna is still battling ear infections and is on her 4th course of antibiotics within an 8 week time frame. Yeah, that's just awesome. She no sooner comes off of them, she's back on. This time she didn't even have a fever, just complained of pain in her ears and she was deaf, again. So I really didn't even think they were infected. I thought maybe there was just too much fluid. I called her rheums office at Duke to run it all by them and see what they would want for if she did go to the ped. They are so awesome with communication that even on a "bad, crazy day in the office" in their words, they STILL called me back within a matter of a couple hours. The rheum said that 1) whether her ears are infected or not, it's time to call in an ENT to take a look. :(  2) Skip her MTX this Friday for SURE and possibly hold MTX and Humira next Friday. We'll wait and see what the ENT says about what's going on when we see him Wednesday next week and then call Duke. The rheums said that given how long she has been on MTX (Sept.08) and Humira ( Dec.09) she SHOULD be okay skipping these doses. Not entirely reassuring but I know we have no choice. Her ped said that the ENT will LIKELY suggest tubes. Not a big deal, right? Lots of kids have them, lots of kids have had many. Well not MY kid! Sure, it could be worse. Sure, I'm thankful it's not. But that doesn't always make the current struggle any easier. I read something this morning, "Without struggle, there is no progress.". I liked it, pretty profound.

When Jenna was last seen at Duke, just last month. Seems much longer ago! Anyway, we were given a script for PT for her. FINALLY. I really didn't know what to expect, I just wanted her to get some relief from the constant pain and fatigue.  I found a place here in town that looked great and they said they could help her. At her 1st appointment we learned some new things, ALWAYS learning with this disease. Her hamstrings are SUPER tight! He thinks that this is what is causing her pain behind the knee. Also, she has significant weakness in her hips and upper legs. I had no clue. We thought she was strong. Her hamstrings are so tight that she struggled just getting into some of the positions to stretch. Her hip muscles so weak that she needs to contort her body to lift her leg. WOW. We went home with some "homework" and had our 3 week follow up this week. I'm not overly impressed. For one thing, Jenna is 7, not 77. So if you for the most part treat 77 yr olds, are you REALLY going to know how to handle a 7 yr old?? I don't know, things didn't feel right at this appointment. Jenna had really struggled over the last 3 weeks with these exercises and she didn't make any progress. When I told him this, he said that with kids it's tough to tell because maybe they just aren't trying. DUDE, wrong thing to say. I tried telling him how much the leg lifts hurt her hips, especially the left hip which we noticed is weaker. He kept mentioning the exercises hurting her behind her knee. HELLO?? Is this thing on? Her HIP, they hurt her HIP. Ugh, I don't know. I just had that "feeling", ya know? So I put it all out there to my AWESOME group of JA Moms on Facebook!! LOVE those ladies! They told me that she for sure needs a ped specific PT, I really should have known this. Also, they told me that I did the right thing by listening to my gut. It hasn't failed me yet. So, one of the Moms I just met and she's local AND she gave me the name and number of the ped PT that her daughter used AND she is right here in town! Trouble is she is out from knee surgery but all good things come to those who wait. :)

Okay, ONE last tidbit. Remember WAY back last Fall when I posted about requesting a 504 plan for Jenna at school? Remember the troubles we faced with that? Would you believe....we are STILL struggling to get this? Yep, still struggling. I had decided to let it ride and try again next year. After speaking with the folks at our local AF as well as some FIERCE JA Moms I was encouraged to pursue it. Things are moving along. I hate that I needed to make threats to get things moving, but they are none the less moving. Without the Arthritis Foundation....NONE of this would be possible. I told them in no uncertain terms that I can't do this without them! And you know what? They've got our backs. How...cool...is....THAT?

Where do I start???

It's all good news, I just don't know where to start! I feel so behind. Okay so we'll start with lab results. This is something that I had been very worried about, given the fact that she has not had proper labs done in over a year. They....looked.....GREAT! Sedimentation rate is WELL within normal range, WOW. Platelet count is only SLIGHTLY elevated, not a huge concern. The only other thing out of whack was her Alkaline Phosphatase. The rheum nurse explained that in kids it can be high simply based on the fact that they are generating a lot of bone. I'll take it. So, her body seems to be tolerating all the meds AND there apparently is no hidden inflammation. SO, why does she still feel so miserable??
Well, on Thursday she had her first PT session. She seemed to be feeling pretty good that day so I was sure he would think we were nuts for bringing her. Plus she was in one of her, "NO nothing hurts now or ever" moods. *SIGH* But as he was talking to her and checking her out, he was able to somehow by poking around on the back of her knees, reproduce the pain she feels and she admitted that YES, that's it. She then fessed up to her feet bothering her by days end by but that was ALL she was willing to own up to. One of the things he had her try was to stand on one foot and bend down to touch the floor and then stand back up. Most kids SHOULD be able to do this with only slight wobbling. She fell over. Partly goofing off, partly that her muscles are weak. He also pointed out that she has flat feet, virtually NO arch. We had been buying her Keds because she said they were soft and comfortable on her feet. She has always been so picky with shoes. He said they were all wrong for her feet and therefore contributing to her pain. AWESOME. He referred us to a specialty shoe store to have them properly fit her for a well constructed sneaker that would provide good stability. They guy at the store was awesome and we got her some GREAT sneakers! Never heard of the brand, "Brooks", but we will for sure be back for more when she outgrows these! Okay so back to PT. He also discovered that her hamstrings are super tight! She can't straighten her legs except when standing. With all of her hypermobility, her hamstrings are tight?? She couldn't even get into a proper position to stretch them. This will take some work. So we came home with a sheet of exercises to strengthen her hips, thighs and knees as well as stretches to loosen up her hamstrings AND instructions to get her shoes (which we did Saturday). He said he wanted to wait three weeks before seeing her again to see how much progress she could make with better shoes and doing her homework. The exercises are tough on her and the stretches painful but she HAS to do them and we HAVE to make her.
Then on Friday morning I went down to Charlotte to the Arthritis Foundation offices to meet with the person in charge of the Let's Move Together Walk. Our team is not doing so well with getting new members OR most especially with raising any money. This has had me really bugged and I thought for sure I was missing something. I had a GREAT time meeting with Stefani! I left there with some fresh ideas and some fresh energy! I am definitely feeling more positive. It's just going to take some creative thinking. While discussing different possibilities, she mentioned that they would be more than willing to go into Jenna's school to do a presentation and get them involved. I told her GOOD LUCK. Not only have I tried repeatedly and unsuccessfully to get them involved, we can't even get a 504 plan out of them. The more we talked about that, the more outraged she became. Yep. She said they're on it now. Eager to see how this plays out. She suggested 1) Requesting a transfer OUT of that school 2) Contacting a lawyer since what the school is doing is highly illegal. I told her that I would wait and see what happens with the AF contacting them. If they still won't budge, then we will take action. I just left there feeling so good, knowing that we aren't alone. I also left with some great posters, "vintage" AF walk t-shirts, shoe laces and water bottles . So excited about the possibilities! OH, I also left with packs of paper "bones" to sell to raise money! I brought them to our pharmacy and they said they would be more than happy to sell them for us! You know, "Would you like to but a bone for $1 to help support the Arthritis Foundation?" Shyeah! We have some more stuff in the works too. Simply asking people to donate doesn't seem to be working so we are going on to plan B.

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!

I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.

Beautifully Heartbreaking

Lots of things went through my head while watching this. Mostly they were very ugly words. This disease, and the fact that no one seems to care makes me so angry. WHAT IF THIS WERE YOUR CHILD?! This is hands down THE best JA video I have ever seen. Thank you to Esella's family for putting it together.

To Each Their Own

Since her diagnosis nearly three years ago, we have heard numerous alternative therapies to treat Jenna's diseases. I appreciate that people think they are being helpful, I really do. But in all sincerity, do they really think that they know more than the doctors? In the beginning I would be intrigued when someone would offer something to try and I would research it. But, I never really felt safe or secure in the ideas. If it were me? Heck yeah I would try alternative therapies! But for my child? Is it really worth the risk if that therapy fails? Especially when you consider that her arthritis isn't only in her joints, it's in her eyes! Would you really, I mean really risk your child's eye sight just to try something that may or may not work? And before you say it, YES, I knooooow that the meds that we inject her with are dangerous. I know that, believe me I know and I hate it. But for us, when we look at everything and weigh it all out, the risks balanced with the proven success of these meds wins out hands down over anything else. Is it maybe just that people don't understand that this is an autoimmune disorder? Maybe they don't even know what an autoimmune disorder is. I know that it can be confusing, heck, nearly three years in and I'm still learning! We can't simply treat the inflammation and the pain. We need to treat the disease. Your immune system, that thing within your body, designed to protect you against illness and infection actually attacks your body therefore making you sick when you have an autoimmune disorder such as juvenile arthritis. One specific alternative therapy that I have heard of a few times but never paid attention to is antibiotic protocol. It's come up a couple of times in my arthritis family circle (love them!). I never looked into it because it simply didn't sound sensible to me. For one thing, you use antibiotics to kill a bacteria making you sick, there IS no bacteria making these kids sick. For another, how many times have we heard that antibiotics are being over used in kids and therefore a great many of them no longer work?! Most pediatricians refrain from prescribing antibiotics anymore unless for serious infection because of this. So why would I treat my child's autoimmune disorder with antibiotics? I doesn't make a bit of sense to me. Well, there is a group that has made frequent visits to my blog. I keep seeing them pop up but never thought to look into who they are or what they are about. The name of their site didn't ring any bells, but it possibly should have. Antibiotic protocol is right in the name. Finally, the other day it registered with me so I went to their site and looked around. They are of the belief that antibiotic protocol is the ONLY route to take and basically we are all fools for thinking anything different. As the title of this post says, "To Each Their Own". Treat your child's disease however you like, it's not my place to judge you, shame you or mock you. Shouldn't we get that same courtesy? And why hide out in the shadows? If you are going to visit our blogs, our discussion boards, etc., Why not speak up? You see what they are doing, and there is only a handful of them, they visit our blogs and boards, not to help us, not to educate us, but to gather information about us and our kids to share amongst themselves. WE make our lives, our stories, our information public because we want to reach out to people, have people reach out to us and all be there together for on another on this really crappy road. Why are they hiding? Not only is my blog public but I also don't moderate comments. I have been told that I am crazy for doing this. I have nothing to hide, I'm only here to help. On their site, not only do they keep certain areas under lock and key, it states clearly, "Don't mess with us. No exceptions. The WTF Management Team.". Well now, isn't that just a warm and fuzzy welcome? So basically if you don't agree with what they say, don't bother registering, becoming a member and voicing your opinion. I can't even find anything on their site or on another that they recommend that even says how AP works. What do you take? How often? For how long? They talk a lot but don't actually say anything. I plan on asking Jenna's doctors at Duke Children's this week about AP because I like to be educated and well informed. I'm actually very eager to hear what they have to say about it. My blog will continue to be public and comments will continue to not be moderated. I have a lot of people finding this blog by searching key words. If I can help even one person feel as though they are not alone then it's worth it. And if you have something to say? Say it. I won't delete your comment. Just be prepared for the comments that follow. I've been attacked once already on here, we Moms stand STRONG and UNITED.

Is it Spring yet????

So I was I mentioned here in this post a couple of weeks ago, we somehow managed to get through Winter fairly unscathed. But, I figured, one ear infection is still really awesome considering all the crud going through her classroom. She started a 10 day course of Omnicef on Wednesday the 9th and finished on Saturday the 19th. On Sunday the 20th my Mother flew in with my 12 year old daughter from Maine, LONG story not for here, and I was really hoping we could all have a healthy visit for the upcoming week. Having JUST come off an antibiotic, what were the odds really of Bean coming down with anything?? HA! On Wednesday the 23rd Kailey, my Mom and I were having a "big girls" day out at a mall about 45ish minutes away while the small ones were at school and Daddy was sleeping (after working all night). Around 1:20 my phone rings and it's Beanz school on caller ID, CRUD. I answer, and it's her teacher, sounding very apprehensive on the other end, DOUBLE CRUD. She swears that Jenna was FINE all morning, then after lunch Jenna told her she was tired so she told her go ahead and lay your head on your desk and just rest. She said like *THAT* she was asleep. She went over and felt her and she was burning up. She took her temp, 103.7. She called me immediately but of course we were 45ish minutes away. I tried calling Daddy repeatedly, but his phone was silenced. Urgh. When I got to school she was asleep in the nurses office, Poor Bean. By this time of day I knew not to even bother with her peds office so we went straight to Urgent Care. Poor thing couldn't stay awake, her breathing and pulse were way too fast and temp still up. Same high temp as with the ear infection yet her body reacted totally different. Since her throat was red and pussy they swabbed her for strep, no brainer, it was positive. Back on antibiotics! She was off for less than a week! Considering all this, I made the executive decision to hold her MTX this week. This way her body can have a chance to fight off ALL the infection, regain some strength, and then we'll hit her with Humira and MTX next Friday.

A Bit Of He Said She Said

A good friend of mine has a great saying, it goes something like this, " I believe that there are two sides to every story, and that the truth lies somewhere in the middle." I love that saying and I believe that in most instances, it is applicable. However, there are some things that you just can't argue the facts on. You can't fight statistics that are backed by extensive scientific research. Those of you living with a chronic illness or parents to a child with a chronic illness, how many times have you been told that there are more natural, better ways to treat the disease? All of you right? Wouldn't it be great if that would work? I mean really, who wouldn't prefer to treat a disease with natural, from the earth products?? Sadly, those of us who are in this, know that can't be done, it won't work.

A couple of weeks ago an article started circulating on Facebook and Twitter. Unfortunately I can't find the link to the newspaper article, just the blog post. Doesn't matter, still the same rubbish. This piece of rubbish was written by a doctor of Oriental medicine practicing Korean Constitutional Medicine in California. Now, I admittedly know zilch about Oriental medicine. I had never even heard of it before reading this blog post/article. I do however know autoimmune disease and more specifically Juvenile Arthritis. Therefore I can easily say with the utmost confidence that what is written is total rubbish. Here are a few key points just to give you an idea.

"JRA is usually temporary and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."

FALSE! It WILL last a lifetime until a CURE is found! The strengthening of the immune system would only make it worse since the treatment of JA is suppressing the malfunctioning immune system!

"It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences."

Yes clearly an unplanned, unwanted pregnancy caused some kids autoimmune disease, of course. And please, parents, be sure to only conceive your child on optimum weather days okay?? SHEESH!

"The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection. "

Yes obviously daily massage can help ease pain, better nutrition is ALWAYS key for ANY child, acupuncture sure, herbs, whatever, ADDED LOVE AND AFFECTION?! DUDE, if love and affection could cure my child, SHE NEVER WOULD HAVE BEEN STRICKEN WITH THIS!

Then yesterday a friend posted another article. This one, this one makes sense. There are no facts to be disputed, no fluff, just a simple four paragraph article written by a woman living with autoimmune disease since she was a young girl. She writes wondering what it's been like for her parents. Now she is a married woman and has children of her own. She says, "I would sail over the moon to do almost anything for my kids.". She also says, "I often think about the roles of my parents in my battle with chronic pain and illness. I had never considered their feelings before, or what they must feel about how I am doing, because quite honestly, my battle has been very overwhelming because of the level of pain I deal with every day. " AS the parent of a chronically ill child, I cannot begin to tell you how much her words mean to me. She goes on to say, " My Mom is my role model for motherhood." and "My parents are my heroes." I can only hope that Larry and I are doing even close to this well for our Jenna "Bean". I tell you this kills me, it KILLS me everyday that I can't take this from her. I feel it's my own personal failure. WOW....where did that come from??? Well there it is. I guess it's been inside me somewhere, my heart or my head. I feel as though I have failed her miserably, in the biggest way possible. I'm not protecting my child from the monsters in the closet so to speak. Her JRA is her monster in the closet and I can't make it go away with a hug and a kiss, with story book or a song sung at bedtime, with a prayer or a favored stuffy. Mommy can't fix this. I would give my HEART to her if it would fix her and make her well.

I had no idea that writing this post would bring any of this out of me. I thought I was just going to be sharing some recent articles, facts and opinions. I can't tell yet if this WAS therapy or if I NEED therapy. But, now I need to go find a tissue...

2011 JA Conference

The site is finally up!!! WOOT! The info that we have so desperately been waiting for is here! We are going into our third year on this journey but this will be our first year at the conference. Year 1 I don't think I knew anything about the conference, or if I did, I didn't think we needed it. HA! Year 2 we just had too much going on in our lives to even think about getting there. Year 3, this is our year! I am so excited to do this, I just can't even begin to describe it. Trying to figure out if we will go as a family since the rates are all the same anyway, or if just the Bean and I will go. If it's just the two of us we will take the train which will be way easier for her. If we all go we have to drive since 4 (or 5, another long story) train tickets will be too expensive. The drive will be painful for Bean, but then we aren't tied down to the train schedule which quite frankly, bites. So, lots of decisions to be made, but, bottom line is, at the very least, Mama and Bean WILL be there! And if Daddy and Bub have to stay home, they announced yesterday on their Facebook page that they will be doing webstreaming this year. SWEET! Not the same as being there but at least they can join in and learn with us. I cannot wait to meet all of these people that I have been blessed to come to know in a virtual world. I will finally be able to speak with them face to face, hug them, laugh with them, cry with them, SHARE with them, in person, in real life. SO very blessed. Thank you God.

We were SO close!!

We almost made it through the entire Winter without any major, fever producing bug of any kind. So close, but not quite. She certainly hasn't had a great Winter. She has had lots of fatigue and pain issues but she hadn't gotten sick. Considering all that has gone through her school and the fact that NC is having yet another crummy Winter, I felt really lucky. Last Saturday she was very clingy, didn't want me leaving her side for any reason, more emotional than usual and just generally out of sorts. I just figured she was more tired than usual. Then Sunday morning she awoke with ...um....we'll just say messy pants. She's 7 now, so....that's certainly not typical. She said her belly hurt pretty bad but that she felt okay otherwise and she really didn't want to miss church. *sigh* She loves church, she cried when I told her I didn't think she should go. She assured me she would be fine. So she went and indeed she did seem okay. She was very quiet the rest of the day though and said her belly still hurt. Monday morning I decided to keep her home given the belly pain, "messy pants", and she had Humira and MTX injections Sunday afternoon. I figured a day of rest was in order. She seemed just fine all day and night so Tuesday morning we sent her off to school. Well, she came home digging in her ear and crying that it hurt really bad. Oh she broke my heart. This is the kid that has pain EVERY day in her hands, legs, feet and God only knows where else. She rarely even mentions that pain never mind cry over it. This was open mouthed sobbing, for HOURS, like, all night long hours. I was giving her Motrin, warm washcloths, nothing soothed her. By morning she had a temp of 103. Aw crud. So I called her peds office first thing. They typically have plenty of "sick kid" appointments. This time they had sick doctors. Aw crud. So they had no appointments and suggested we go to Urgent Care which actually was fine with me since they are literally right up the road. The place was surprisingly deserted when we got there so she was seen very quickly. She saw a nurse practitioner , which again, was fine by me, since I think many times they are way more thorough and have a better bedside manner. She took one look in Jenna's ear and said, "OH YEAH! It's infected alright! It's red, inflammed and full of blisters!". EWWWW! Full of blisters?? OUCH. Poor thing no wonder she was sobbing so hard and long! They had also just done a strep swab. She asked if I cared about the results as treatment would be the same. Nope, doesn't matter. She said it's likely positive since her throat didn't look so hot either. Same end result anyway, antibiotics. I finally remembered to suggest Omnicef on the 1st try. It is the only antibiotic that works for my kids yet it is always the 2nd string med. So, a 10 day course for her to kick this infection in the tail. After 2 doses, plus Motrin and Tylenol piggy backed her fever, which had climbed to 104, finally broke, left and stayed gone! Her belly is still bothering her so she is being very cautious about what she eats and how much of it. She is still even more tired than she normally is. She is resting on her own without being told and is able to laydown through an entire feature length film. That is saying an awful lot for Miss Jenna Bean! So that was Wednesday that we started the Omnicef, it's now Friday and day 3 of no school. She is enjoying being home but she misses school too. I think she will be happy to go back on Monday. If we can finish off Winter with this being her only major illness, I'll call that a success!!

On a small side note, only 26 more days until her appointments at Duke Children's!! I am so happy, excited, eager to get her back in there!

A Work In Progress

Yesterday morning we all finally met to have Jenna's 504 plan meeting. We have only been trying to do this since the beginning of November. It's now the end of January. ZOINKS. Mother Nature played a role in it, cancelling school and therefore the meeting on two occasions. Plus trying to coordinate with our schedule, her teacher, PE teacher, principal, guidance counselor and school nurse (who is shared w/ another school) is tricky at best.

I was so nervous going into this. I don't do well in these kinds of situations. It always feels very confrontational to me and I don't do well at all with confrontation. That, plus, our initial meeting didn't go real well. We left there feeling as though we would need to battle school officials to get this for her since she is ahead of her grade level academically. *I* knew that her medical conditions entitled her to a 504 plan to ensure her comfort and attendance at school were not an issue. Just not sure they knew.

We felt much more supported at this meeting. The majority of the room seemed to understand, have compassion and be on Jenna's side. Makes sense given this is a K-3 school right? Compassion? Understanding? For children?? Eh...at any rate, some great ideas were thought up and I feel confident that everything will work out.

I did mention that at her March appointment at Duke Children's I would be speaking with the social worker there and I will see if she can contact the school guidance counselor directly to iron some things out. I really think that may be the best route.

I emailed her teacher this morning to see if the tempurpedic cushion we had brought in for her chair had made it to the classroom. She said it did indeed and so far it seemed to be working great for her! She also said however that this had her classmates asking a lot of questions. She felt it was time to sit them down and discuss Jenna's illness with them but wanted to check with us first to make sure that was okay. I love that she is so in tune with all these kids. I told her it is absolutely okay. Jenna won't be comfortable with it but she needs to learn that her friends can be her biggest support system. This disease is a part of who she is. She needs to own it. I am very eager to hear how this all played out today.

It's A Family Affair

Life with chronic illness really is a family affair. Those of you living it likely already know this. Or, if you are new to chronic illness then maybe you aren't "there" yet. And, if you are the fortunate one not touched by chronic illness at all in your own family then pay attention :)

Two and a half years ago when Bean was diagnosed with JA and then with Uveitis we had no idea the impact it would have on our family. We just thought, "Okay, so she's got this thing, she'll take meds, it will go away and maybe come back, no big." HA! Can you say blind? First of all, it doesn't always go away. I have recently "met" some teenagers on Facebook with JA. They have had it since they were little tots and have never made it into remission. Dang. Second, yes, it is possible to end up in remission, but with so many kids, it just comes back a couple years later. So, guess what happens once that kid hits remission? The parents sit and wait. Wouldn't it be great to be able to just shout from the rooftops that "it's" gone and then go about leading a normal life? Not gonna happen. Heck, even while in "medicated remission" the parent sits and waits for the proverbial "other shoe" to drop. You see that is the other scenario that often times plays out. The child gets into a "medicated remission". That is when they are currently on meds but symptom free. Typically what happens is that after 2 years of being on meds without symptoms of the disease, the doctor will start weaning the meds with the goal of coming off completely and not having the symptoms return. But, sometimes while in that medicated remission the current med stops working. What?! Yes, it just stops working. Then you go back to the drawing board and start all over with yet another med. It's exhausting, frustrating and frightening to think about all this. Then there is when something new pops up and it gets you thinking, "What now??". A parent of a "normal, healthy" child likely doesn't panic over every headache, stomach ache, fever, rash, ache, pain, limp, ANYTHING out of the ordinary. I know I never did. And that worry isn't just limited to the child that has the diagnosis either. With a hereditary disease you have to worry about ALL of your children. I have 2 other children that could, potentially at any time develop JA and Uveitis just like their baby sister.

That's part of how it's a family affair. The parents never feeling like their minds can rest. Then there are the siblings. Another JA Mommy blogged last night about how chronic illness affects their family. One BIG way it has is this. "It broke my heart today when Matty got sad and upset because we can't sign him up for baseball this Spring. He looked at me and said "If you and Jordan weren't sick I could play." And the thing is, he's right." I can't tell you how many times we have had similar things happen in our own house. "Can we go to the park today?" No, your sister needs to rest. "Can we go to the mall today?" No I'm sorry, you're sister can't walk that much. The list goes on and on. It's ridiculous the things that we keep our other kids from doing because their sister is sick. Another Mom recently blogged about a photo that her oldest daughter had found of her baby sister from earlier in the year. "A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. " Then there is shot night. My oldest daughter can't even be in the same room when Bean gets her shots. I have asked her to please come sit and hold her sisters hand. Let her know that you are here. Tell her it will all be okay. She just can't do it. I don't know what part of that breaks my heart more. My son on the other hand can typically stay nearby for shots. Many times he has gone to his room and come back with his blankey and favorite stuffy from when he was a baby. He gives it to her to comfort her. Two weeks ago, her Humira shot was so not going well. It was a really ugly fight. I looked up just in time to see him run from the room. *sigh* I hate that. I hate what it does to my other two kids.

Of course, let's not forget the strain on the parents marriage. I used to hear about families facing tragedy that crumbled and fell apart and never understood it. Why would they not form a closer bond and help each other through. I still don't really know why but I have an inside look now. It is really hard on a marriage having to deal with a chronically ill child.

I just re read this and I'm thinking to myself, "I don't want this to BE our lives!" I don't want us to be defined by the disease. Yet how do we not? It is part of our EVERY day. I would love to pretend that it isn't there but I can't. Maybe there is a balance to be found.

This Isn't "JUST" Aches and Pains

This story is from the Let's Move Together Arthritis Walk Orlando Florida website. The arthritis that Bean and all these other kids suffer from is NOT your grandmas arthritis. It isn't from old age, or an injury. It's an autoimmune disorder. THAT is why it is so serious. It can attack ANY part of the body. I debated whether or not to even share this. It's scary and it's depressing. But ya know what? It's REALITY for us. A Tribute to the life of Jennifer Schott Jenny Schott as a child Jenny never wanted to be an outsider, and to her family and friends, she never was. But having been diagnosed with juvenile rheumatoid arthritis in 1980 when she was about 2 years old, she would soon find it impossible to live like everyone else. After a diagnosis during a hospitalization in Pittsburgh because of severe soreness and swelling in one knee, Jenny was prescribed increasing dosages of baby aspirin, up to 60 per day, to deal with the inflammation, soreness and pain. But, according to her father George Schott, the pain just got progressively worse as did Jenny's condition. "We would have to give her hot baths every morning just to loosen up her joints, and the aspirin never seemed to provide relief", says George. He continues,"As she grew and her condition became more complicated, her medications became more experimental ranging from extremely painful gold injections, steroids, growth hormones, to Methotrexate before they had much experience with proper dosage of this drug. The doctors tried all they knew, but treatment for the disease was not well known and she was very much an experiment for the doctors at that point". Despite the severe pain and experimental medication, Jenny strived very hard to maintain a normal childhood keeping up with all the other kids until finally around the age of 8 when it just became impossible. While she excelled socially and academically, her physical condition was deteriorating quickly. But she tried very hard to not let her disability get her down. Jenny was an accomplished and articulate public speaker, winning speech competitions as well as reading from the Bible at church. While most of us are worried about standing out in high school, Jenny couldn't help but stand out in her first electric scooter which she now had to use to get around. Still she took it in stride and her scooters and eventually wheelchairs became part of her identity in her school experience. It never was looked upon as a negative thing as she continued to excel, graduating from her high school number one in her class with the highest grade point average, a huge accomplishment! Jenny's High School Picture It was in high school that Jenny started to experience what would become the highlight of her life, teaching and helping others. She tutored other students and eventually started her own tutoring business. After high school, Jenny was determined to make her dream of becoming a teacher come to fruition. She received a number of monetary scholarships to continue her education including acceptance into Rollins College and a full paid scholarship to Stetson University because of her excellent academic performance. But she could not accept them because it would have required her to keep a full academic schedule. At this point in her life, her medications and physical condition were becoming so extreme that this wasn't an option. However, determined as ever, Jenny learned how to drive a specially designed van so she could get back and forth to college completely on her own since living away from home at this time was not possible. So she enrolled in Seminole Community College (now Seminole State College) which allowed her much more flexibility. While at SCC, Jenny was Founder and President of a support group called "Inside the Outsiders", where students dealing with handicaps could come together and share experiences and provide support to each other. Jenny also continued to tutor students from a number of local elementary and high schools, and even other colleges. She graduated from SCC with High Honors and Distinction with a 4.0 GPA, was a Member of the Phi Theta Kappa Honor Society, and an Associates of Arts in Mathematics degree in hand. Unfortunately, as Jenny was working hard to live her dream, the arthritis was working harder at destroying her body. "Over the course of her life, Jenny had virtually every joint in her body operated on and either totally replaced or fused by inserting steel rods in places like her wrists and ankles. It was surgery after surgery" reflects her father George. He continues,"Despite always being heavily medicated, none of the medications ever worked for Jenny". Still refusing to let the arthritis take over total control of her life, Jenny was able to get a job as a Mathematics and English teacher teaching students with learning or physical disabilities at a private school, and finally achieving her dream. At least for a short time. George Schott with daughters Jenny and Laura at Kennywood Amusement Park, PA Sadly, her dream became a physical nightmare. Her condition worsened until finally she had to leave the teaching field. Eventually Jenny was in so much pain that she had very limited mobility and spent much of her time with doctors, in hospitals, or at home in bed. Some of the medications she was given were so strong that they left her incoherent at times. The disease, as well as the effects of 20 plus years of drugs, operations, and experimentation, was affecting all of her internal organs. Her doctors, realizing how much pain she was in, kept her heavily sedated until finally they told Jenny that she had less than a year left to live. Jenny was at peace with this news, even orchestrating her own funeral service by selecting her clothes, readings from the Bible, and the music. With the help of Hospice, she spent the last six months of her life at home, mostly sedated to keep her comfortable as the arthritis finally took all control from Jenny's hands. And one of her last wishes was a very unselfish one. Jenny wanted to create a scholarship for handicapped students at Seminole Community College. Jenny peacefully passed away at the age of 26, a fully accomplished teacher having taught many lessons to everyone she met whether student or observer. To this day, the "Jennifer L. Schott Memorial Endowed Scholarship", which was started completely with donations in her memory, is awarded yearly at Seminole State College to provide financial assistance to other handicapped students to inspire and achieve success in their future endeavors. Her father George sits on the board that chooses the recipient from the group of students applying for the scholarship. It was years before George could openly speak about arthritis taking his daughter away from him. It also strained relationships with his other daughter Laura and ended his relationship with Jenny's mother. "Since day one, the Doctors told us that dealing with a child with a chronic condition would affect all of our relationships, especially the closest ones" he says. "The doctors also told us that Jenny was a textbook case of how extreme arthritis can consume a life and even take it". Having separated from and eventually divorcing his Jenny's mother, George found great solace and support from his current wife Lisa. "The first several years after Jennifer passed, George did not talk about it with anyone" says Lisa Schott. She continues, "Eventually, the time came where he was ready to turn this life-altering experience into something that would pay tribute to Jenny and help other families dealing with juvenile rheumatoid arthritis". George & Lisa Schott turning tears into triumph as they present Tony Ward with the first big check ($10,000) for the Arthritis Foundation. George and Lisa approached their friends for help, through the Parrot Heads of Central Florida, a social club whose slogan "Party with a Purpose" accurately describes its members' desire to make helping others a routine part of their life and a fun experience. Their brainchild would eventually come to light in the form of a Bowling Tournament to benefit the Arthritis Foundation called "Fruitcakes in the Alley", named after the Jimmy Buffet song "Fruitcakes". In its first two years, the event resulted in more than $25,000 for the Arthritis Foundation to benefit Kids with Arthritis. The third annual event scheduled for the last weekend in January 2011 is already close to selling out the bowling alley. It's a weekend festival of music, bowling, camaraderie and of course raising funds and awareness for the cause of arthritis. "We couldn't be more grateful for all the help and support of our fellow Parrot Heads in making this event a fun tradition that means so much to not only George and I, but also the Arthritis Foundation", says Lisa, now President of the Parrot Heads of Central Florida. "It has helped George tremendously to open up about and deal with all the emotions of losing a child, and rationalize what happened by helping others". Lisa also said "I am so proud of him for being such a strong, loving man and creating a legacy for Jenny that will live on and on". George and Lisa Schott can always be found orchestrating the music and announcements from the Tiki Booth at the bowling tournament. And each year, there in a picture frame sits a picture of a beautiful girl with a warm smile named Jenny Schott, who may have lost her battle with arthritis but won the war by inspiring her father, stepmother, and many others to bring awareness and necessary funds for research for a cure to the illness that never kept her from fulfilling her dreams.

Counting My Blessings

I just feel such a strong need today to count my blessings. It is very easy with a chronically ill child to be angry and hateful. It's something that unless you are or have lived it, you simply can't understand. Most times I wish more than anything that we didn't have to know what it's like. Some days I get very angry with God for doing this to us. I get very angry with the disease for raging through my sweet Beanz body and wreaking havoc on it. Then there are days like today. I know that God has a plan and a purpose for every single one of us. I know that He loves my Bean. He isn't doing this to hurt her or to punish her. Instead it is to use her and me through her. It is my life's purpose, because of what is happening to my child, to educate myself and then educate the world to the best of my abilities. I thank God for that. It has also I know given Bean a strength that she otherwise wouldn't know. It gives her siblings compassion and understanding that they otherwise wouldn't have.

We are also very blessed that Bean, despite all that she does go through, could be much worse. I have been so fortunate to connect with other JA Moms and we all share our stories with each other, many of them now with the world via blogs. A great number of these children still have not found the right med, combo of meds and or dosage of meds. Many of them struggled just to get the diagnosis. Too many of them are having their vital organs attacked either by the disease itself or by the medications they are taking to treat the disease. Some have already had surgeries on their joints and now have more scheduled. Some of them have had to have joint replacement....IN A CHILD! Way too many of them simply cannot get the Uveitis to go away and stay away and now have permanently damaged eyes. Their eyes!!! They are just babies for crying out loud!

So please, take a moment today, and count your blessings.....

In The Eyes Of A Child

Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them.

Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

Matthew 19:13-14

This Is Why I blog

Last night as I lay in bed, trying desperately to turn my brain off (put the jokes AWAY people!) and fall asleep, I couldn't stop thinking about my blog. Mine and all of the others that I have found along this journey. I couldn't stop thinking of how so grateful I am to have this whole universe of fellow blogging JRA Moms & Dads. To know that we are not alone in this war that rages on in our children is such a comfort. Outside of our blogs, many of us have found each other on Facebook. Just another way for us all to stay in touch and be a part of each others lives. For this I am so thankful. I know that I could not do this on my own.

Nearly two and a half years ago now, when Bean was first diagnosed, I was so confused. I knew of arthritis. Many people in my family have it. I had a childhood friend that had JA. But I had no clue what it all meant. I didn't understand any of the terms that these doctors were using. I didn't understand what my child was going through. I didn't know how to cope. So I of course googled JRA. I didn't come up with much. But I did come across a blog written by another JRA Mom. Her blog was filled with facts about the disease in general as well as personal facts about her sons battle and her part in it as his Mom. I felt this huge relief! There are others out there going through the SAME thing! So I sent her an email, asked her some questions, she was GREAT. Since then we have become friends through the internet. Man I love the internet. We even got to meet face to face one time. When we lived in Maine and Bean was seeing Dr. Foster for her Uveitis, this Mom's son had an appointment the same day! You can read about that appointment and see some photos here. She has been such a tremendous help and comfort to me right from the start of this journey. She continues to connect me with other families as well as educate me.

So this is why I blog. This is why all of my Facebook and Twitter friends are seeing my blog constantly posted and plastered everywhere. This is why I am constantly asking you to share the link to my blog. It isn't so that everyone can read about my daughter for MY benefit. It's in the hopes that I can reach even just ONE family that feels alone. Or in my feeble attempts, maybe I can help educate someone about JRA and Uveitis and all the junk that goes along with it.