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.

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.

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)

Blessed & Thankful

 Today we were able to go back to the church in South Carolina that so generously funded our trip to the Juvenile Arthritis Conference. The two words "Thank You" will NEVER be enough, they will NEVER express our gratitude to these people. Without them we would not have been able to attend the conference. The experience of attending is indescribable. The impact that it had on Kailey, Jenna and myself is intense. While telling of her experience today to the group, Kailey broke down in tears. (okay well I did too but that's besides the point) She told them about her new friend Parker and how amazing he is. She said that Parker is her hero, her inspiration. She wants to be a better person because of him. No matter how sick he is, no matter how much pain he endures, he remains happy and positive. She said that now when she thinks about complaining or she hears another kid complaining, she wants to say, "HEY, GET OVER YOURSELF." For Kailey, this is pretty big. :) In Jenna we see a better understanding of her disease, it's hers and she needs to own it. For me, the bonds formed FAR out way the educational experience. These other Moms are what will get me through this. I just wish that I could somehow express to this group of folks at the United Methodist Church in Fort Mill SC how so very thankful I am. We are TRULY blessed.

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.

Idiopathic

At some point, I don't know when, someone, don't know who, decided that we should call this crap disease Juvenile Idiopathic Arthritis rather than Juvenile Rheumatoid Arthritis. I have heard and read that the reason behind this is to better separate the adult disease from the childhood disease. Wouldn't the term JUVENILE in the name do that?? I suppose that I understand that if a child doesn't actually test positive for the rheumatoid factor than in fact it shouldn't be termed JRA. But does anyone really know what idiopathic means? Doesn't it make an already confusing disease a little MORE confusing?? About a week ago I was watching something on TV and the doctor used the word idiopathic when referring to the disease he was talking about. He went on to explain that idiopathic simply indicates that there is "no known cause or origin". HUH? THAT'S what it means?! Boy did I feel ignorant. I accepted a term for the chronic illness that my child battles without even knowing what it means?! *smacksforehead* I have been thinking on this, stewing on it since that day and decided to post this. I mean, I can't be the ONLY one....can I??

id·i·o·path·ic

   [id-ee-uh-path-ik]  Show IPA

–adjective Pathology .

of unknown cause, as a disease.