Sunday, March 23, 2014

One Crazy Ride

This week has been one crazy ride for us. As you know we’ve been having issues with frequent visits from the MTX Monster. Well, unfortunately he invited himself to Monkey’s rheumatology appointment this past Thursday.

We’ve been visiting our rheum for two years now. On average we go every 3 months. Every once in a while it’s more often depending on how things are going. Monkey knows the routine. He loves his doctors. He especially loves racing Dr. Kietz at the end of his appointments. But, for some reason a switch went off on Thursday.

When our beeper went off letting us know they were ready Monkey was not interested. “Baby, it’s time to go…your doctors are ready for us now.” At that point I got the look..uh oh…then came, “I don’t WANT to go…I want to go HOME!” Next thing we knew he was off running. Oh boy. Now we where those parents with the loud, defiant child who was running through waiting room away from us crying and shouting, “Nooooooo! Nooooo! Leave me alone! I don’t want to go!” When Ed and I finally herded him between us it escalated. He dropped to the floor and played ragdoll. *sigh* Ed picked him up and then the screaming and kicking started. Big tears screaming down his face all the while. You would think that we were taking him to get tortured.

I wish I could say that once we were settled into our room that things got better but they didn’t. I had to stand guard against the door so he wouldn’t bolt out while he yelled at me to move and kept hitting and kicking at me to get me to move. Thankfully hubs stepped in and scooped him up (which of course he didn’t like) but hitting and kicking is not ok no matter how upset you are at Momma and Daddy. So, he retreated to hiding under a chair where the sobbing continued.

I’ll be honest with you here. At this point I was a mess. It broke my momma heart to see him like this. I wish I was one of those stoic moms who can bottle up emotion until everyone else is out of sight but I’m not. The tears were flowing freely down my cheeks through it all. I was a momma full of mixed emotions. I was embarrassed, I was sad, I was frustrated, I was confused, I was angry. Thankfully I went into the appointment knowing that I wanted us to talk about a change in meds. I wanted him off MTX if possible and switched to Enbrel. I never in a million years would have thought I’d be wanting Enbrel. When we started on this JA journey I was scared of MTX but I was terrified of biologics. Oh how things change. So through the sobs and screams and tears (mine too) the doctors suggested Enbrel before I even mentioned it. They read my mind. We gathered him up, skipped the blood work (we’ll go back another time) and headed home. More honesty…I cried almost the whole way home.

So here we are, about to start another leg of our journey with something new. We had to get Monkey tested for TB on Saturday (standard procedure with Enbrel). (Not fun for the poor kid.) and once we get the results back from that we can move forward and make appointments to start his Enbrel injections. Yup, we’re back to injections. Nope, he’s NOT going to be happy about this at all.
BUT…even though I had my mini meltdown on Thursday (along with him) I’m here to share that there is still good that has come from his JA. Yes, I HATE that he has it. I hate that he is ‘different’ and won’t have a ‘normal’ childhood. I hate that he’s going to have to get used to getting a shot every week that burns. I hate that doing that will be his new normal. I mean, he’s FOUR! What I don’t hate are all the people I’ve met because of JA. Other parents who are struggling with the same emotions and feelings. Parents who’ve been down the road I’m just starting on. Moms who can tell me how they dealt with these feelings and how they continue to deal with them. Moms like Kim Miller, author of Living With Juvenile Arthritis. Kim and I ‘met’ on Facebook in one of the JA support groups. We connected pretty quickly and I’m so thankful to call her one of my closest friends. I know it’s strange to call some one you’ve never met one of your closest friends but hey, it’s the truth. Guess what though…that all changed yesterday when I finally got to meet her!

KimPrimantis3.22.14

Even though Kim and her boys reside in Illinois they are making their way to D.C. for the Summit. (You can see her post about that here.) Luckily for me she decided to drive right through Pittsburgh! Woot! So yesterday I had the amazing pleasure of meeting my sweet friend for the first time! We decided to meet at Primanti Bros. (a Pittsburgh must!) for dinner then spent the evening chit chatting away. It was SO awesome to finally sit and talk to her. We’ve spent lots of time talking via FB chat, I mean, she’s one friend that I ‘talk’ to multiple times a week. To be able to actually sit across from her and talk…what a blessing. It came at the perfect time too. She was able to talk to me about their experiences with Enbrel and she eased my mind and nerves quite a bit. We shared our frustrations and concerns but also talked about how proud we were our our brave boys. (Both of her boys have JA.) Just knowing that she’s been down this path ahead of me is comforting. Seeing her boys happy and smiling was a wonderful encouragement too.

This week has been one crazy ride with lots of downs but some ups as well. I’m so very thankful for those ups and those are what I’m going to focus on. I’m so thankful for a husband who’s by my side through all of this letting me cry when I need to and friends who truly understand what we are going through. We’ll get through this…will it be easy, no, but we’ll be stronger on the other side.