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.