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.