Wake me from this nightmare...

So it has been awhile since I have updated the blog. Sorry about that. I have mostly been using the Beanz Buddiez Facebook page for raising awareness and keeping folks up to date. It's just easier than blogging. So let me see if I can bring you up to date and keep it brief.....Here is a brief synopsis of what has happened since last Summer.... In December of 2012, we took Jenna off of Methotrexate. Her body was no longer tolerating it. She was switched over to Arava, with seemingly no issues. In January she was declared in medicated remission from both the JIA and the Uveitis. MAJOR praise moment! We took her off of the daily Meloxicam and bumped the Humira from every 14 days to every 21 days. Revisit in 8 weeks. Go back in 8 weeks to find fluid on both knees and the words "active disease" were uttered again. Well crud. Hold all meds, no more weaning, add daily Meloxicam back into her meds, come back in 8 weeks. WHICH, brings us to today's appointment. For the past 4-6 weeks Jenna has been having SIGNIFICANT hair loss. Yeah, kids with arthritis can lose their hair too. I'll bet you didn't know that. We hadn't changed any meds since January, so I didn't suspect meds. I didn't call her pediatrician or rheumatologists. I just figured I would ask at this appointment. I also could not see where the hair was coming from. I saw no thinning or balding despite the fallout being significant. As soon as Dr. V came in, she saw it. All along the hairline in the front, like male pattern baldness. Of course now that is all that I can see. Apparently Arava causes hair loss. Great. So we are to stop that immediately. Over the past week Jenna has been limping and complaining of ankle and foot pain. Dr. V couldn't see or feel anything in the feet or ankles. But Jenna was clearly feeling pain when touched and manipulated. Some more poking and prodding, her knees looked much better. Some more poking, prodding, manipulating....what is up with the feet and ankles? Dr. V did some moves with Jenna that she doesn't normally do...AHA...what's that? Jenna's leg was "catching". Is it her hip? No.....no pain there. Where is the pain Jenna? She points to her knee. More poking, prodding and "milking". AHA, there is something there! Well crud. Not only does Jenna not get to come off of Humira, but we will be going back to every 14 days. Dr. V said to hold off until we get lab results and she sees today's xrays. She needs a DMARD with the Humira in order for it to work properly. She is going back on Methotrexate. Well double crud. We are going to try taking it in pill form this time. Hopefully that will be easier on her system, won't make her sick for 3 days and won't make her hair fall out. We will see Dr. V again in one month. She will also see ophthalmology that same day. Today was just rheumatology. So it should have been a quick in, out and back home. Nope. Left at 7:30 AM, got home at 3:45 PM. I am tired, my brain is fried and I am frustrated. Could things be worse? Of course! Things can always be worse. Always. Am I grateful for our many blessings? You betcha! I count them daily and thank God for them. But am I pissed off? Oh yeah you betcha. FIVE years my daughter has fought this war. That is more than half of her life and there is NO end in sight right now. That makes me angry. So very angry. What makes it worse is that these kids, all 300,000 of them, are invisible. No one seems to care. Arthritis isn't glamorous enough to make people care. That just makes the anger and the hurt so much worse. These kids deserve so much better than this. Tomorrow is our arthritis walk at the US National Whitewater Center in Charlotte NC. I will be there with a heavy heart. Thankfully, I have met some incredible people through this journey and some of them be there tomorrow. The major blessing of this curse is the bonds formed through the war.

So how was YOUR Summer?

Sorry that I have not updated this blog for so long. We had a BUSY, BUSY Summer!! The very best part, for me anyway, is that overall Jenna remained pain free. She had some aches and pains here and there. But her rheums have explained to me that this is "normal" for a JIA kid. Even in remission, they will have breakthrough pain. AS long as it's not something that lasts, she is okay. :)

 Pictured above is Jenna riding Big Bob (read about Big Bob here.). This was her very first time riding a horse! She was blessed to receive the gift of a week of horse camp at Triple Cross Ranch. Look at her feet in this picture. See how her toes are pointed OUT? A year of PT couldn't accomplish that! Jenna and Bob formed such an amazing bond in that week of camp that Miss Kari has brought Bob out of retirement JUST for Jenna! Starting next week Jenna will get to ride and care for Bob once a week for two hours after school. Not only is this good for her physically, it soothes her soul like nothing else ever has been able to. Other than being over tired which resulted in some crankiness, we really had no SPD meltdowns for that week. And guess what, Bob has arthritis too. I think that only made Jenna love him more.

After that, we had our annual trip to the beach! Living so far inland is a big bummer for us. We LOVE the beach and used to go numerous times during the Summer. Now it's a once a year event. But, it's something to look forward to each year. We had GORGEOUS weather for our trip! Jenna spent lots of time digging in the sand, looking for treasures. But her favorite part was boogie boarding! She handled those waves like a pro! Terrified me, truly. Oh my goodness the smiles and giggles those waves brought! Many times she wiped out, getting her knees smashed on the ocean floor, completely buried in the waves. But each time she got back up and readied herself for the next big wave. Concurring that ocean was a huge accomplishment for her. Allowing her the freedom to do it was a huge accomplishment for me. :)

I can't for the life of me figure out how to rotate this darned thing on here. So I apologize for it being sideways. :p

The picture above is of Jenna and only SOME of her loot from her Dream, granted to her by Jeffrey Gottfurcht and his Dream Team! Seriously, this is only maybe HALF of it! If you haven't yet heard of JGCAF, I suggest you check it out. There is also a link at the top of the page. Jenna received gift cards to shop online at American Girl, choosing anything her heart desired. Not only did this dream bring Jenna a joy that nothing else could have, it also brought the rest of us PEACE! Hahahaha! No seriously, it's part of the SPD, regulating or modulating or something like that (I'm still learning). It is difficult if not impossible for her to keep herself occupied with anything, at all. This results in her being a pain in the patoot to anyone under the same roof as her. Since receiving these dolls, we hardly see her! She is content to sit in her closet (it's a walk in, with a light, more of a small room) changing their outfits and hairstyles over and over and over again. And smiling...she just keeps smiling. Aaaaahhhh, we have not seen this much happiness out of this little bugger in such a long time!!!

In between all of these big time events Jenna had OT twice weekly, spent lots of time in our community pool and hanging out with friends. I'd say (other than all the sibling bickering!) that this was the best Summer yet! Monday of this week Jenna started the new school year as a 3rd grader. All Summer long we heard about how much she hates school and never wants to go back. Well, Sunday night as I tucked her in, she admitted, with a BIG smile, that she was excited to go back and that Summer is boring. HA! Whadda ya know? This year in music she will learn how to play the violin. She is so excited by this! This is her last year in elementary school. Next year it's on to the intermediate school. *SIGH* My last baby, growing up.

So, how was your Summer?

The Beast Within

This post isn't about Juvenile Arthritis or Uveitis. It's about SPD (Sensory Processing Disorder). I can't remember if I have mentioned it before now and honestly I am too tired to check. It seems I should know when she received this latest diagnosis, but I can't. If I have mentioned any of this before, just bear with me and or skip ahead.
A month, maybe two months ago I took Jenna to our regular pediatrician to talk to her about Jenna's emotional, irrational, really quite frightening outbursts. She has had them for as long as I can recall, but they were getting worse and more frequent. She was also leaving notes all over the house that said things like "I hate myself", "I hate my life", "I don't even know why I was born", "my life is an epic failure", just to name a few. She is way too young to be feeling this. So, I went into the appointment thinking Jenna is just under a lot of emotional stress on account of the JIA, Uveitis, meds, etc. Her ped started asking me a series of questions that made zero sense to me. Wait, I did blog about this. Now I remember. At any rate, apparently Jenna isn't depressed or stressed out. She has Sensory Processing Disorder. We were referred to a counselor to help Jenna identify and work through her emotions. Talk about epic failure. After two 1 hour sessions in which Jenna barely spoke, the counselor decided that Jenna is overindulged. Okay, BUH-BYE! We were also referred to an occupational therapist to get a full, official evaluation. I had done quite a bit of research before going into the eval. Some things made sense, others not so much. So I really thought the OT would tell us, "Nah, she's fine.". As usual, I could not have been more wrong if I had tried. Jenna exhibited deficits in areas that I never would have guessed. So, right now Jenna sees Miss Karen at OT every Thursday morning before school. Once school is out she will go every Tuesday and Thursday mornings.
This is all turning out to be such an incredibly painful learning process for all of us! As soon as I got her eval report, I told my husband that we needed to make some changes in how we deal with Jenna. NONE of this is her fault! All these things that we used to get so frustrated with her about, we used to punish her for. They aren't her fault. Now don't think I am going to start excusing bad behavior. No sir! But we will deal with and manage it differently. Things like brushing her hair and her teeth. Most kids don't necessarily LIKE doing it, but they do it. For us this is a tearful meltdown 2x daily, and it's still only done half way. Turns out this is actually PAINFUL for her. Any touching to her is painful. She told me today that she felt like she was being burned when Miss Karen touched her with a soft brush. I wanted to scream, "WHAT?!?!?!". But I held my tongue. Miss Karen explained that her brain is hardwired to send a signal that any touch is painful. To her any kind of touch is painful. Can you even imagine?? Too many sounds to her that are all at once and jumbled up make her feel "weird" and get her "engine running". She gets very keyed up and then her brain starts sending out mixed signals. She becomes overwhelmed from all of the sensory input. Jenna is very much a sensory avoider. This morning she had meltdown after meltdown with maniacal laughter in-between. It hit me once we were in the waiting room, when her eyes lit up at the sight of Miss Karen, was her behavior all morning a result of her excitement over going to OT?? Miss Karen said without a doubt. She was in a heightened state of arousal, her engine was all revved up and she simply cannot regulate that engine. I still don't fully understand that, yet it makes sense. And, it simply feels good knowing there WAS a reason behind this mornings behavior. She was also able to explain to me 1) Why Jenna has a meltdown about taking a shower and 2) Why Jenna wasn't able to explain to me herself why she hates taking showers. Miss Karen says that Jenna hates showers because of the water hitting her head and face as well as the sensation of the water running down her body. It is all TOO MUCH sensory input! IN the bath she is surrounded equally by water. Aaaaah, okay, gotcha. So why couldn't she just say so?? There is a term for it, but I can't remember it. Basically, Jenna knew why, but her brain can't send the words in sentence form to her mouth to tell me. As soon as Miss Karen said it, Jenna's eyes lit up like Christmas and she vigorously nodded "YES". After her session, Miss Karen explained a little more to me about what is going on with Jenna. I knew about the tactile stuff, but there is so much more. Even things as simple as, when you start falling to your left, your brain sends a signal "PULL RIGHT" so that you won't fall and get hurt. Jenna's body doesn't. When she falls left, her body says "PULL LEFT" and down she goes. When you go down a slide, your natural instinct is to put your hands down and push yourself up to stand, protecting your face and head. Jenna can't. Her body doesn't get that message from her brain. She will just continue forward and face plant. I get the feeling that we have only BEGUN to scratch the surface. I don't even think I am even coming close to expressing to you just how painful this is to see Jenna going through this. How much it is BREAKING MY HEART. I am MOMMY. It is MY job to fix her!!! I feel so angry and so sad all at once! When your child hurts, you want to make it better. I CAN'T FIX THIS. I can help her, but I can't fix her. Tears ARE streaming down her face, just as the song says.All I can do is TRY to fix her. I would like to ask God, "WHY HER?? Why?? Why is she being given SO much?!". But ultimately, it doesn't matter. She HAS been given this and we will deal with it.

"I Can Do All Things Through Christ Who Strengthens Me"

Philippians 4:13

2012 Charlotte Arthritis Walk

Last weekend was the 2012 Charlotte Arthritis Walk. Instead of having our usual Beanz Buddiez team, we teamed up with three other JIA families from the area to form the Kids Get Arthritis Too Krew team! What a blast!  I don't have our team photo yet. When I do I will be sure to share it. So far the event has raised $59,585. Donations can be turned in until June 30th! Great job everyone!! Already looking forward to next year!

I need to lower my expectations...

Yesterday was Jenna's three month routine follow ups with the ophthalmologist and rheumatologist at Duke Children's Hospital in Durham NC. Almost four years in, and I still do not have a handle on this. With every appointment, I go in thinking that I know what's coming. Yesterday, I went in thinking that THIS is it! THIS is the appointment that changes our lives as we have come to know them! THIS is the appointment that we FINALLY get to start reducing her med doses. Ummmm, nope. 

I managed to snap some pics with my phone yesterday too (she never let's me!!) So I am going to share those while I tell of our day.

 This first pic is Jenna on the ride to Duke. It takes us about 2 hours and fifteen minutes. That used to be a torturous ride, but she has gotten used to it. This trip I let her bring the laptop to play on. :)

 Up first yesterday was ophthalmology. THIS is the appointment that always makes me the most nervous. Uveitis is often a silent disease. So it can be there, flaring, causing damage and we would never know. (I tried to get her to unfold her arms. NO doing!)

 First they check her vision. She has been complaining of difficulty seeing at distances. BOY I guess! She really had trouble with the charts.

 Then a fellow comes in to check her with the slit lamp to look for signs of the Uveitis. Jenna is such an old pro at this. They don't even need to tell her what to do anymore!

 These are the "really cool" sunglasses that they gave her. Glad you like them Toots. She needed to have her pupils dilated and lights can be painful afterwards. SO, Dr. Wallace came in, checked her over with the slit lamp and deemed her cell and flare free! WHOOT and HOLLA! She needs glasses but hey I'll take it!! She is really excited about getting glasses. She has no clue what a pain they are. Dr. W said he is fine to start reducing meds whenever the rheums are and he will see us in three months. BUH BYE!

 Off to Pediatric Rheumatology. She was very scared to stand this close to the railing for a pic, but she did it for me anyway. Thank you Bean. :) We got to see our favorite rheum, Dr. V!! YAY! We hardly ever get her. Okay, so here is where the unexpected comes in. The GREAT news is that her joints all look awesome! No signs of any active disease. No swelling, stiffness or heat anywhere. SO, my thought was that since she is doing so well AND since the Methotrexate has been making her so sick, let's get her off this crap. Ummmm, nope. WHAT?? WHY?! Three months ago at her appointment, she was having severe morning pain and stiffness. Even though she looked fine at the appointment, morning were still torture for her. Peg legged, scooting around on her butt, miserable. She was put on once daily Mobic. That has worked like magic. No more pain, no more stiffness, she has seemed to be doing better than she has in a very long time. Dr. V is concerned that if we reduce her meds now, after only three months on the Mobic, that it will bring all that pain and stiffness back. She feels that Jenna's body needs more time, that in six months if she is still doing this well we can start stretching the space between Humira injections. Okay, I can take that. Not what I was hoping for, not what I was expecting, but we can take it. We are going to TRY to change her DMARD from Methotrexate to Avara. The MTX is just making her so sick. Partially because, well, it's toxic chemotherapy. Partially, we think, because she is anticipating being sick and the anxiety of it coming is only exacerbating the effect. Here is the problem, Avara is a pill that cannot be crushed or cut up in anyway. It must be swallowed whole. Jenna can't even swallow one mini M&M or a tic tac. :( My hope is that the simple fact that if she can swallow this tiny little pill each day that she gets to skip one shot a week and not get sick is enough motivation for her to get that danged thing down her throat hole! I guess we will find out tomorrow morning.
Jenna shared a few things at yesterday's appointment. Jenna sharing thoughts and feelings is pretty rare! When Dr. V asked about Jenna's activity level I was about to tell Dr. V that it's been great! But out of the corner of my eye I saw Jenna shaking her head "No". I asked her, "You DON'T think you have been active?". Again she shook her head "No". I said, "Really? You seem to Daddy and I to be more active." Again, the shake "No". It hit me then. I said, "Do you mean you aren't as active as your friends?" This time I got a "yes" shake. Ooooooooh, well, :(. She also, for some reason, asked me about the Humira Pen yesterday. I had no clue that Jenna even knew about the pens! I said, "Why do you want to know about them?" She said, "Well, when can I get them instead of the needles? That way I can just, *insert sound effect*, get it done." After explaining how the Pen works, getting the med in super quick, which makes it hurt worse, she was all set with the pen. :p I told her that if she changes her mind to let me know and we can get her the pen. After that discussion, she asked me if Jordan uses the Pen for her injections. Jenna looks up to Jordan SO very much!!! One day, they WILL meet! I told her. "No, Jordan doesn't get injections anymore. She has to get infusions for her meds. " Jenna then asked me to explain infusions.I told her that Jordan has to go to the hospital to be hooked up to an IV for hours to get her meds through the IV. Jenna's eyes bugged out and she said, "HOURS?!" I said, "Yes, it takes hours. How many depends on the med. But still, hours." To my surprise, Jenna said, "She's lucky." I'm sorry, SAY WHA?! I asked her, "You would RATHER have infusions??" She replied with a very somber, "Yes." Well that about knocked me off my chair.

And then there was this. Jenna always draws on the table paper at any appointment. But this was new. She has never been so expressive about her arthritis.

What IS "normal" anyway??

Seriously, can anyone tell me who or what IS "normal"?? Don't we all struggle to find our own personal normal? Whether you are healthy or sick? So what IS normal?? Are YOU "normal"? I certainly don't think I am.
If you, as an adult, were diagnosed with a chronic disease that causes debilitating pain, how would you handle your day to day activities? Or any extra activities? Would you make adjustments to minimize the pain? Or would you continue to live life as always? Would you push on even further to live life to it's utmost fullest? Can you even answer those questions?? Now, imagine it isn't YOU that has been diagnosed. It's your toddler. You have been told that your baby or your toddler has a chronic disease that causes extreme, unimaginable pain and fatigue. What would you, as a parent, do? Can you even answer that? I'll tell you what we did. Since Jenna's diagnosis 4 years ago, we have in fact limited her activity. Isn't it part of our job as parents to protect our children from harm? So isn't that what we were doing? Protecting her? Well, in a sense, yes we were protecting her body. But what about her soul?! By limiting a child, are you not crushing their soul? I am not real sure what has woken me up to this. It could simply be that she is older now and has stronger opinions on things, I don't really know. All I know is, Jenna WANTS to do things. She wants to go jogging with me and her brother, she wants to play football with her friends, she wants to play on the trampoline with her friends, she wants to go in the bouncy house at the carnival, she wants to be "normal" like her friends! So why stop her? Initially I told her that she ISN'T like other kids. THEY won't have any pain after or while doing these things and she likely will. She told me, "I don't care.". Well, then why should we? If she is willing to pay that price, why should we stop her? Don't we ALL want our kids to grow up believing that they can achieve anything that they set their minds to?? So why should my kid be any different?! I am so very proud of her. She is stronger, braver, than most adults I know. You go baby girl, do it.

Kids Get Arthritis Too Krew Fundraiser

On May 12th we will join our friends, family and community to walk the Charlotte NC Let's Move Together Walk at the U.S. National Whitewater Center. Last year was our 1st year participating in this event and I can't wait to go back and do it again! For the entire month of April I am running an online Scentsy Fundraiser. As a Lead Consultant with Scentsy I can set whatever percentage of my commission I choose to donate for fundraising events. Seeing as how this is a cause VERY near and dear to my heart, I will be donating 100% of my commission from this online party. Ordering is VERY simple! Simply go to Beanz Buddiez Scentsy, click on "Buy From Party" next to the "Kids Get Arthritis Too Krew", and start shopping!! Browse through ALL of the full size, mid size and plug in warmers, through the campus collection warmers, the patriot collection warmers, the hero collection warmers, the over 80 scents, room sprays, sanitizing hand foams, scent circles, scent paks, Scentsy Buddies and baby buddies, and do NOT miss the new Layers line!!! Should you have ANY questions on any of this please reach out to me at amy.cunningham5@gmail.com.

A new day....a new diagnosis....

For quite sometime now, I don't even know how long, I have been worried about Jenna's emotional well being, her mental state. She will say things like "I hate my life, I hate myself, I don't know why I was even born, No one loves me, I have no friends, I'm all alone". She told me the other night that she is sad every day. Not necessarily all day, but most of the day, every day. She is just a little girl, that's too much! I finally broke down and called her pediatrician. That was a big step for Mama, it meant admitting something is broken and needs fixing. I went in to today's appointment thinking to myself, "she just has a lot to deal with, more than most kids, (2 chronic illnesses, daily meds, weekly injections, being apart from her big sister, etc) we'll just get her some counseling to work through it all and she'll be right as rain. Well.....not quite how it all went down. She asked a series of questions, such as "Is she picky about her clothes? Is she picky about food? Is she picky about her surroundings?" I'm thinking to myself, "What the heck does this have to do with anything??" I tell her how Jenna (I didn't want to say she is mean in front of her) is not exactly nice to her friends, that she is bossy with them. The doc says, "Well how do you mean? Is it maybe more that she is controlling?" Well....I suppose so. "Does she not like being touched or handled physically?" Ooooooooh no!!!! You cannot touch Jenna, ever. At this point I can't even remember all of the areas of day to day life we covered. She eventually tells me that while she thinks Jenna could for sure benefit from some counseling to help learn to identify her emotions and learn how to cope with them, what she feels will help the most.....is.....OT to help with Sensory Processing Disorder. I'm sorry, say wha?? Really?? She explained that we ALL have sensory issues to a certain extent. Such as fabrics we don't like, foods we don't like, sounds or smells that bother us, but WE can cope and adapt. I child with SPD cannot. It can send them into a fit of rage, cause a major emotional meltdown, cause them to shut down completely, etc. Ooooooh, Oh, I see..... She said most kids will innately know methods of coping. BUT, most of them are physical. Such as carrying heavy objects, moving about fast and furious, covering their bodies with lots of heavy blankets, squeezing their joints. ALL of these things are likely causing her pain (because of the JIA) which in turn will cause another meltdown, another shutdown, another outburst, not necessarily in that order. The more that we talked, the more everything became clear to me. She has likely had sensory issues since birth, most people do. But given everything else she battles, SPD has developed from it. She can't control her reactions to certain things. This pains me. PAINS ME. The turmoil within her is so much more than I ever could have imagined. My heart BREAKS for her. Her doctor said that likely, we will NEVER rid her of all of this. But, with some counseling and OT we can hope to get rid of SOME of it, and help her to cope with what's left. As I was leaving I texted a friend to tell her what happened. We are so close in our hearts, that she automatically knew how I was feeling. This is word for word her response, "One thing I thought of when ____ was given the asperger dx is that he is still the same boy he was yesterday before the 'label'" HOW TRUE?! She is still Jenna. Nothing has changed. Her heart is still hers and it is BIG. So we are off on another adventure her and I. Another war to wage, another battle to be fought, another mountain to climb. And wage, battle, fight and climb we will!!!

Ephesians 3:19-20

New International Version (NIV)

¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. ²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

AWARENESS

It still continues to shock and amaze me, nearly 4 years into this, that people don't understand autoimmune diseases. I can't really blame them. If not for Jenna, I probably wouldn't understand either. That's why I am so very grateful for the International Autoimmune Arthritis Movement. Their SOLE purpose is to educate the world about these often misunderstood diseases. They are "staffed" with volunteers who work tirelessly and diligently. Thanks to them, hopefully one day we can all look back and say, "Remember when........"

Defining "Hardship"

hard·ship

 noun \ˈhärd-ˌship\

Definition of HARDSHIP

1

: privation, suffering

2

: something that causes or entails suffering or privation

I guess that overall, Jenna is one of the “lucky” ones. Her diagnosis of Juvenile Arthritis not only came at a young age, but it also came quickly. By being diagnosed so young, she really doesn’t even seem to realize that she is in any kind of pain or discomfort. It has become a way of life for her. Being diagnosed so quickly means that we were able to get it somewhat, not entirely, but somewhat under control before any serious damage could be done. That being said, isn’t that in itself a hardship? Being a child and not knowing a comfortable, pain free day? Of course she has all the typical hardships that any child with JIA suffers. The weekly injections, monthly blood draws, numerous visits to doctor’s offices, missed school, not being able to keep up with friends, needing to drop out of sports, being “different”.  But Jenna’s biggest hardship is being without her big sister.

You see, we were living in Maine when Jenna was diagnosed in 2008. Maine is one of many states in this country without a pediatric rheumatologist. In the beginning we were taking her to an adult rheumatologist that was willing to treat children. Being new to the disease, we thought that this was acceptable. Arthritis is arthritis, right? WRONG.  I am so fortunate that I “met” so many wonderful JIA Moms online. They “schooled” me on the importance of Jenna seeing a pediatric rheumatologist. The differences in adult arthritis and juvenile arthritis are so vast that unless specifically trained, there is no way to effectively treat the child. Her adult rheum said that he knew a fellow at Duke Children’s Hospital and he would speak to him about getting Jenna in there. Would we be willing to move? Or choices were as follows: Stay in Maine and travel to Massachusetts every time she needed to see the rheum, which at that time was every 3 weeks. Continue having her treated by the adult rheum, and watch her deteriorate. OR, pack up and head south. For us, there was no question. We knew that we needed to have her seen at Duke. They are renowned as some of the best in the country. It is a long and complicated story, but my oldest daughter was left behind with her Father in Maine and we still, nearly 3 years later, do not have her with us.

So, imagine if you will, being a 5 year old sick little girl, scared, in a new city, a new state, new school, new home, new friends, new doctors…..and not having the love, guidance and support of your big sister. That is Jenna’s biggest hardship. She is going through this fight without her best friend by her side.

It's "JUST" Arthritis, It's Not Serious

Allow me to paint a picture for you, please. If I do this right, then you will never utter the words, "It's just arthritis, it's not serious", ever again.
Friday night in our house is "shot night". Nope, not talking about pouring my favorite liquor into a tiny glass and tossing it back. I'm talking about injecting our youngest child with toxic medications in order to attempt to control her chronic illnesses and stop them from destroying her body. That in itself is a horrible position for a parent to be in. Which is better? Taking our chances with the diseases destroying her? Or take our chances with the medications destroying her? Hmm....what would you do if it was your child? I pray that you never have to face that decision.
So, back to shot night. We do this every Friday. We have been for the past 4 years. But it's not just Friday really. The countdown starts as soon as the injections are done. 7 days, 168 hours, until we have to do this all over again. The stress and anxiety is every day because you know it's coming around again. There is also the daily reminder of the injections thanks to the daily meds she has to take to attempt to counteract the side effects of the injections. Though those don't always work so well. Then the alarm goes off on Friday letting you know that it's time. You get the med basket out, prepare the syringes, have your child get her comfort items and get in her favored "shot spot". All the while she is crying, begging you to please not do this, please not hurt her, asking you WHY are you doing this to her again. Now it's time, everything is ready. In our house, Daddy does the injections, Mommy does the hand holding and soothing. Every week another chunk of my heart breaks listening to her screams, seeing the look of absolute terror all over her face as the medicine goes into her and burns like acid. I hate it. I hate everything about it. The real kicker is that despite these medications, she still experiences periods of pain, stiffness, discomfort. You know how your body feels when you have the flu? That feeling of, "Man, I feel like I've been hit by a bus.". Yeah, imagine being a child and LIVING with that feeling.
Still think it's "just arthritis, nothing serious"?

It's a Fundraiser!!!

A big thank you to my wonderful friend and neighbor Michelle for this! Michelle is a Sr. Director with the direct sales company Thirty-one. This is an AMAZING company based on the Proverbs 31 woman and they sell amazing product! They are also a company that likes to give back and that is exactly what Michelle is doing. I can't thank her enough! Details on the fundraiser as well as contact info for Michelle are below. Please share this info with everyone that you know! Thanks so much and happy shopping!!

"Pain is weakness leaving the body."

Apparently this phrase has been used by the Marine Corp for many years. Not sure where I've been, but I had never seen or heard it until today. Or, I did but it didn't register. So today I was at the gym, moving and grooving on the elliptical, listening to my Pandora dance cardio station and I see this on a tshirt. "Pain is weakness leaving the body." I read it over and over again as the guy wearing the shirt is running on the treadmill in front of me, Taio Cruz's Dynamite blasting into my ears, and I had a moment. It was all I could do to not break into a fit of tears right there in the middle of the gym. This must explain then why kids with Juvenile Arthritis are so strong. Pain leaves their little bodies ALL THE TIME. So if this is true, and why not, then if all this pain (insert weakness) is leaving their bodies, then what is left? STRENGTH. It's kind of ironic considering that even if these kids wanted to, they can never be a Marine. But, they are just as strong as a Marine. It's just a different kind of strength.
I decided right there on the spot that I too would adopt this philosophy. I am going to work out like it's my JOB. I am determined to make my body strong, lean, mean and healthy for Jenna "Bean" (hahaha, that rhymed!) and all the other 300,000 kids just like her that can't.

"You have BEAUTIFUL ankle bones!"

That is what Jenna's rheumatologist said to her at her 3 month appointment this past Wednesday. "You have BEAUTIFUL ankle bones!" Who would have thought that would be music to our ears? Before she started her exam I told her that while I don't think Jenna is at 100%, I still feel she is the best she has been since her diagnosis in August of 2008. After examining Jenna, the doctor agreed. Jenna is doing GREAT. I expressed my concern over the fact that she is still experiencing periodic pain and stiffness. When a storm blows through, when the temperature drops, sometimes when she wakes up or after a car ride. I asked her, "Is this just her normal? Is this okay?" She assured me that yes, this is okay and perfectly normal. Even a child that goes into remission can still experience all of this. She does, after all, still, have arthritis. Even if she hits remission, she won't be cured. Sadly, surprisingly, this is music to my ears. I could not be more happy. She does have an awful lot of tightness behind her knees. Again, perfectly normal for a child with arthritis. Her homework before her next appointment is to get that stretched out and be able to at least reach her ankles with her fingertips. Right now she can't even sit up, she is so tight. Now, you may be thinking, "Wow she is doing so great she must be ready to taper meds!" Yeah, nope......read on.....

Jenna also had her 3 month ophthalmology appointment on Wednesday. We didn't get terrible news, but it wasn't what I had hoped and prayed for either. After nearly two years of hearing Dr. Wallace say clear and quiet, I heard the dreadful word CELLS. She isn't in a full blown Uveitis flare right now. He assured me that this could go either way. We could come back and she will be in a full blown flare. Or, these few cells could just go away all on their own. Not terrible, but not so great either. Had her eyes still been clear and quiet both doctors would have been comfortable tapering meds. Not now. These few cells have taken that chance away. Even when we go back, if they are gone, it will be risky to try tapering now. We are so blessed with amazing doctors. Dr. Wallace took the time to very patiently reassure me that since she isn't having any major, adverse side effects from the meds she is on, keeping her on them right now is really the best thing. Overall she is doing well on them, taking her off of them right now could be disastrous. We are also blessed that he understands the dangers of steroid eye drops. We are not putting her on a course of drops at this time. We are waiting to see what happens. When we go back to have her rechecked, if the cells are still there, then we will start drops. AND GET HER OFF OF THEM QUICKLY. So very thankful that he is educated on this. Sadly, many doctors are not. They, for whatever reason, don't understand the dangers of these drops being used long term. We will need to do a med change to in order to get her off the drops. But we will cross that bridge when and if we get to it.

Overall, I still consider this to be a great day for appointments. Her joints look and feel great! Her eyes have hit a teeny, tiny, minor bump in the road. It will be okay. No matter the turn it takes, I have faith, it will be okay.

A much needed reminder.....SLOW DOWN

A friend posted this to her Facebook just now. I felt compelled to share with everyone that I know. Please, read, absorb, follow through and pass it on.

"Long ago you came to me, a miracle of firsts.
First smiles and teeth and baby steps, a sunbeam on the burst.
But one day you will move away and leave to me your past,
And I will be left thinking of a lifetime of your lasts.

The last time that I held a bottle to your baby lips...
Last time that I lifted you and held you on my hip...
Last time when you had a binky stuck inside your mouth...
The last time that you crawled across the floor of this old house.

Last time when you ran to me, still small enough to hold,
Last time when you said you'd marry me when you grew old.
Precious, simple moments and bright flashes from the past,
Would I have held you longer if I'd known they were the last?

Your last few hours of kindergarten, last days of first grade...
Last at bat in Little League, last colored paper made..
Last time that I tucked you in for one last midday nap...
Last time when you wore your beat-up Green Bay Packers cap.

Last time you caught a frog in that old backyard pond...
Last time when you ran barefoot across our fresh-cut lawn,
Silly scattered images to represent your past.
Would I have taken pictures...if I'd known they were the last?

The last dark night you slipped in bed and slept between us two,
When last I read to you of God or Horton Hears a Who!
Last time that I smelled your hair and prayed after your shower...
Last time that we held devotions in the evening hours.

The last time you were M.J. in our games of give-and-go...
Last time that you made an angel in the melting snow.
I never even said good-bye to yesterdays long passed.
Would I have marked the moments...if I'd known they were the last?

Last piano lesson, and last soccer goal you kicked...
The last few weeks of middle school, last flowers that you picked.
Last time that you needed me for rides from here to there...
The last time that you spent the night with that old tattered bear.

Last time that I helped you with a math or spelling test,
Last time when I shouted your room was a mess.
Time and life moved quicker, taking pieces of your past.
Would I have stretched the moments...if I'd known they were the last?

The last time that you needed help with details of a dance...
Last time that you asked me for advice about romance.
Last time that you talked to me about your hopes and dreams.
Last time that you wore a jersey for your high school team.

I watched you grow and never noticed seasons as they passed.
I wish I could've frozen time, to hold on to your lasts.
For come tomorrow morning life will never be the same.
You'll pledge forever to your girl, and she will take your name.

And I will watch you, knowing God has blessed you with this day.
I never would have wanted, Luke, to somehow make you stay.
They say a son's a son until he takes for him a wife.
You're grown-up now; it's time to go and start your brand new life.

One last hug, one last good-bye, one quick and hurried kiss...
One last time to understand just how much you'll be missed.
I'll watch you leave and think how quickly childhood sped past.
Would I have held on longer....if I'd known it was your last?"

Poem was quoted from the book, "Rejoice", by Karen Kingsbury.

Thankful

Many times I am asked how I get through the day without crying. I answer that honestly, some days I don't. Some days I do cry, I do get angry. I think that's normal. But overall, I know that we are blessed, despite our trials. Of course I have days that I wish that our daughter wasn't battling a chronic, painful disease. But, that's the hand we were dealt. I recently had a friend tell me that she is "Currently having a disagreement with God." You see her son was diagnosed with a chronic illness. She hasn't yet seen the gift in it. Or, possibly she has, but still can't "forgive God" if you will. That may offend some people but that's how I see it. When we or a loved one are handed a crappy deal, we get angry with God. What do you do when you are angry? Stay angry, or forgive. I see the blessings that her sons disease has put in her life, I think she does too, but she isn't THERE yet. For the most part, I am okay with where we are. Sure, Jenna has daily pain, wakes up stiff and unable to bend her legs or flex her feet, takes way too many medications, gets sick from those medications, has muscle weakness, walks with a limp, struggles to keep up with her peers. But you know what? I have recently learned to just watch her, just silently observe. I'm still not sure if she even notices any of these things about herself, but if she does, she doesn't seem to mind. So why should I? She adjusts and presses on, so why shouldn't I? She really is quite amazing! Just last night I was watching her sit in the recliner, playing her brother's guitar (she is teaching herself!). She stopped strumming, wiggled around, adjusted her legs, sat and looked at them for a moment, it was clear they were hurting her, then she settled and began strumming again. AMAZING! Yesterday morning I heard her coming down the stairs on her bum, slowly, because her legs and feet weren't cooperating. When she got to the bottom, she stood up, got her backpack and went about the tasks of getting ready for school. AMAZING! There is beauty in everything, even in suffering. It is up to US to find that beauty!
There is a Mom right now, sitting in the hospital with her one and only baby girl. They are on day 27 in the hospital. On day 28, she celebrates her 5th birthday. That will mark 5 years of being sick. Now, how would YOU handle all of this. Here is how this Mom handles it....with grace and thanks.....

Some of the most beautiful man made things I have ever seen were all the amazing stained glass windows in Paris. They remind me of Eleanor. When the world looks at her unfortunately they see a bunch of broken glass and pieces that don't fit perfectly. When I see her I see all the small pieces coming together, the many breathtaking colors forming an awesome little girl.I will never understand why God made her so different but I know that she was made perfect and in His image. She is exactly the little girl He knew she would be and I am blessed beyond belief to not only know her but to be able to say she is MINE!

World Arthritis Day

Today, October 12th 2011 is World Arthritis Day. A day to bring awareness to a disease affecting nearly 50 million Americans and 300,000 children. That's just in America! I really would like a WORLD number affected. We ask for just one day, one day out of 365 that the world hear and learn about this disease. Not a month, a day. One day to wear blue, light up blue and talk, out loud, in public about ARTHRITIS. It is almost as though people are ashamed. Arthritis doesn't get the same glamour as some other diseases. I just don't understand this. Not that other diseases aren't worthy of the attention and awareness, but really. In the month of October, try going anywhere without seeing the color pink. A few months ago it was another disease asking the world to go blue, and the world did. And who doesn't recognize the awareness color of yellow and what that represents. All of these diseases are deserving of attention. I repeat, ALL OF THEM. Including ARTHRITIS. Maybe, just maybe, one day my daughter's disease will get the attention it needs. Or better yet, a cure will be found and we can make this all a distant memory.
She asked me this morning, "Why is today World Arthritis Day?". So that people will know, so that maybe they will learn and understand.

Is it too much to ask?

I just want her well. I want her to know a day, a full 24 hours of feeling WELL. I know that she can't remember what it's like, because lately, I can't even remember it. I can't remember what she was like before she got sick. Was she always this angry? Was she always this emotional? What were her habits? Did she always act this way? I feel like I am mourning the loss of my WELL child. Now, do not get me wrong. I do realize that she is much better off than some children, I get that. But some days, that just isn't enough to soothe the ache that is in my heart. I WANT HER WELL. Is it too much to ask? I used to pray for, hope for remission for her. Remission you say? Like cancer?? YES, remission, like cancer! Because, like cancer, Juvenile Idiopathic Arthritis has NO CURE. So, as of right now, all that we can hope for is remission. As of right now, she can never be 100% rid of, cured of this disease. This disease that encompasses and endangers her entire body. At the JA Conference this Summer I got a new perspective on remission. I was able to meet many teenagers and young adults that have never known remission, yet are leading full, happy lives. I then realized that if Jenna never went into remission, as long as she was happy, I would be okay. Well, today I'm not feeling it. Today, I WANT HER WELL. Is it too much to ask??
Today I feel like screaming as loud and long as I can until I can make people understand what we go through. Today I feel anger and resentment at the hand we've been dealt. Tomorrow is another day...

2011 Charlotte NC Jingle Bell Run/Walk For Arthritis

A few months back, I got an email from our local Arthritis Foundation office asking me if Jenna would like to be the Youth Honoree for the 2011 Charlotte Jingle Bell Walk/Run for Arthritis. WOW! I felt so honored that they thought of my girl. What an amazing opportunity for us to do what we are so passionate about, raising awareness that kids get arthritis too. At first Jenna was not thrilled about this. She is a very shy, introverted child. She does not like any attention drawn to her. At the JA Conference she seemed to gain a bit more acceptance and understanding of the disease. Somewhere along the way she has also gained some sort of self assurance, some confidence maybe? She is apparently performing songs and dance in her kids class at church. She is very excited about a concert at school in which she hopes to be chosen to play an instrument. She has also gotten excited about being the Youth Honoree for the Jingle Bell Walk/Run. :o) If you would like to donate, join our team or form one of your own, you may do so at charlottejinglebellrun.kintera.org

The Eyes

 So, the GREAT news is that her eyes remain inflammation free! I am still so stunned by this. That means that since December of 2009, the Uveitis has not acted up for her. That is incredible given the difficulty we had getting it under control. The combination of Humira plus Methotrexate continues to keep her eyes healthy. It amazes me, it brings me great joy, yet I can't help but also feel a bit of guilt. You see, it isn't so easy for everyone. There are still so many little ones that struggle to find the right combo of meds to tame this beast. I hate that. I feel so lucky, so very blessed. And again, I must stress, to ALL of those that doubted and STILL doubt our move down here, had we stayed in Maine, this would NOT have happened.
Since her eyes are still healthy, we are not comfortable playing around with her meds at this time. Despite the fact that her joints continue to flare off and on, it just isn't worth the risk to her eyes to play with the meds. I called her rheum office and scheduled her 3 month follow up and asked that the nurse please speak with Dr. V about keeping meds the same for now. I got the call back before days end. What a relief, she is FINE with keeping her on the MTX and Humira for now and we will see how she is at her appointment in November. PHEW!
So for now we wait and see, again, what this disease will do. It is so hard to just let things be. To not be hyper vigilant, always on edge, questioning every little thing. I don't even know how to explain it to someone with a healthy child. But, for now, I am going to just let things be as they are. I am going to try not to ask her every morning, every afternoon, every night, "How are you? Are you okay? Are you sure?" I need to back off. I need to TRUST that if something is wrong, she will tell me. We'll see how this goes.

She was so upset about missing art class AGAIN this week. It's her most favorite enhancement class. What a pleasant surprise this was. The Art Cart was out at Duke Eye Center. :o)