Tomorrow morning both kids have orientation at school, then they both see Dr. F in the afternoon. I’m taking the whole day off.  That wasn’t so bad when I thought I was working Monday. Well, the X informed me he has a out of town meeting on Monday and can’t take Marty to his infusion.  So I’m taking off Monday too.  All this, on top of my appointment yesterday with Dr. F, means I’m working 2 half-days out of 4.  Yeah, that’s going to mess with my budget.

Don’t you wish you were me?  :)

Marty’s history of pericardial effusion, combined with medicines that suppress his immune system, means we have to take precautions if he has any kind of procedure that could allow bacteria, germs, or whatever, into his blood stream.  When he had the surgery on his toe this summer, he had to have extra steroids for three days, and massive antibiotics before the surgery.

After a brief moment of panic, I called Dr. F to see about getting antibiotics and extra prednisone.  Then I told Marty to go ahead and take an extra dose of prednisone.  Now I’m waiting for a call to either tell me the script has been sent to the pharmacy, or to ask exactly what medicines he’s supposed to have.  My contingency plan is to find old antibiotics that someone didn’t finish last time they were sick (I know, we shouldn’t have any) and call the rheumatologist next week for more prednisone.

Just one more fun thing about having a kid with arthritis…

He got his Tylenol and Benadryl, then a dose of methylprednisolone, then finally the Remicade.  Marty and Bella got into the 4th inning of their playstation baseball game then the Benadryl hit.  Marty decided he needed to rest his eyes for about 30 seconds, then he was ready to go.  When Bella decided she was tired of the playstation, Marty finally gave in to the fatigue.  Pillow and blanket soon followed.

The infusion actually went more quickly than I expected, and Marty was more alert than I anticipated.  That is, until we got in the car.  He crashed, and it was all Bella and I could do to get him to his bed when we got home.  On a happier note, their dad volunteered to take Marty to his infusions so I don’t have to take off work.  He is usually off one weekday every week, so I was glad to take him up on the offer.

Yesterday, the kids spent the day at my sister Irene’s house, and swam several times.  By the time I picked them up, Marty was spent.  His feet hurt when we got home, and I reminded him that the steroid pulse he got on Monday was wearing off.  Today he seemed to be OK after his meds kicked in, and I dropped them off at Irene’s for another day of swimming.

So far the Remicade seems to be working, but then Enbrel started off the same way.  We will know more in a couple weeks, after his second infusion.  Here’s hoping the Remicade doesn’t disappoint.

Now my sister Irene (who generously paid for horse camp) wants us to come tomorrow and swim in her new pool. Well tomorrow I need to get my car inspected, practice my handbell solo for Sunday, move the bell table and equipment into the sanctuary, either get a haircut or figure out how to make it look decent for church, find summer church clothes that will work with shoes that I can play bells in, and go to bed early so I can make my 8 am sound check on Sunday. Getting groceries will have to wait until Sunday. Not so sure we will have time for Irene’s new toy.

No go back and re-read the first sentence of that last paragraph. Go ahead, I’ll wait…

Can I just say that I am getting tired of seeing Irene get what she wants while working oh, maybe 15-20 hours a week and getting paid a retainer whether she works or not? It’s not like she’s some high powered well trained attorney or something. She plays with kids. She’s a nanny.

To be fair, she did have a horrific accident at work a few years ago that put her in the hospital for weeks, left her scarred for life, and provided the big settlement that paid for horse camp, the pool, and the house she bought for cash. Cash. I just get tired of constantly being reminded that she now has money. Did I mention she paid cash for her house? It’s not like I haven’t endured my share of pain, I just wasn’t fortunate enough to do so because of the negligence of a big company with deep pockets that didn’t want their name dragged through the press during a trial. Just sayin…

So how is it that I struggle with depression on a daily basis, have a child with a life altering medical diagnosis, have an ex husband that decided the sickness and health part of the marriage vows didn’t apply to him, have my credit ruined by said ex husband, and lose my benefits and take two pay cuts, but when I complain to other family members I’M the one being negative and childish? Really? Have you SEEN what I endure on a daily basis? Do you KNOW what it’s like to be constantly reminded that I was supposed to be the smart one in the family? Now I feel like I have the hardest time just getting by. Damn messed up ADD depressed brain!

There are lots of times I feel like the only people that truly understand are other single moms with JA kids. Especially the ones that are depressed. Yes I know that ALL moms of JA kids have a good idea what I deal with, but they have a husband that is there to help. They have someone to share decisions, give mom a break from being a caretaker, provide an income when mom has to take kiddo to another doctor appointment and run interference when someone judges us for babying a child in pain. Sorry, but if you’re married you just don’t know what it’s like to have EVERYTHING fall on your shoulders. Usually weary overworked shoulders. No offense to my married friends.

Wow. I didn’t mean for this to be a rant about my misfortune at the life planning meeting before I was born, but it seems that is how it ended. I know, it could be worse. Yes, I’m sure some of you have even bigger problems. No, I can’t blame God for all this, but I sure wish He would provide a way for it to get several degrees easier. All I can say is He better have some really kick-ass plans for my kids and me. Every day is another “opportunity for character development.” Frankly I’m sick of it.

I want a refund from my reality check.

Ever since the appointment, Marty’s mind (or some would say the devil) has been messing with him. He is scared it won’t work and he will have to have an even longer wash out after a few doses of Remicade. I think he is afraid he will end up having to either go to school in a wheelchair or miss several days. I know he is worried that he will never get better, he will always be inflamed, and he will never reach 5 feet tall. How many almost 14 year old boys are 4’8″? I’d guess not too many.

In a way I’m sad that he appears to have given up his dream of being a professional baseball player. Part of me says that realistically the chances of that happening are slim to none, so it’s better he make other plans. But part of me doesn’t want to see that dream die. Before he got sick he was a good athlete and an excellent baseball player. Since then not so much. And that really stinks.

As a mom I really wish my teenage son could focus on normal teenage stuff. Things like getting excited about driving, being interested in girls, and yes, even getting that teenage attitude. I would take all the attitude in the world if it meant my son and I weren’t bonding over discussions of disabilities, school accommodations, trips to the infusion center, and deciding which cafeteria food at the hospital is our favorite. I honestly wish I had no reason to know about sed rates, inflammation levels, bone age xrays, needle gauges, live and dead vaccines, imunosuppressant therapy, or learning words like tenosynovitis.

I would give anything if my son didn’t have to wonder whether his chest pain was caused by sore muscles or a pericardial effusion. If he didn’t have to learn how to adjust a wheelchair. If he had no idea how it felt to be the kid that runs funny or gets sick a lot. If our out of state vacations didn’t center around a juvenile arthritis event. If he hadn’t learned to speak publicly about his pain to raise funds for research. If he never looked at his joints wondering if they were swollen. If he didn’t understand saving his energy for the important stuff in life. If he didn’t have to choose between being in pain or drawing attention to his disability.

No kid should have to think about these things.

Waiting for Tuesday when we go to the rheumatologist.  We have all agreed that going back to Kineret isn’t the thing to do, but I have no idea what they will suggest.  I can think of 4 different medicines we haven’t tried, all of which are biologics.  We have discussed Actemra and Rilonacept, both of which are targeted to systemic juvenile arthritis, but the doctors don’t like them for one reason or another.  We have not discussed Humira, Remicade, or any other “non-systemic” medicines.  I’m guessing that is where we will go next, since Enbrel is also not approved specifically for systemic.

I have lots of questions in my mind, most of which will either be answered on Tuesday, or there aren’t simple answers.  Like, how long until the new medicine should be working?  Do I continue to give him injections at home, or will we have to start making trips to an infusion center?  Are the risks with other medicines similar to Kineret and Enbrel? When will Marty start to grow again?  Will he be better before school starts?  I know things are about to change, but I don’t know how.

Those are the questions for the rheumatologist.  The larger life questions are those that may never be answered.  I wish I knew how likely it is for Bella to get it, how to make Marty not hurt anymore, whether he will go into remission, whether his growth will catch up, whether he will have long term complications, and many more.  There are lots of unknowns when your child has a chronic illness.

<dum, da dum da dum. dum. dum bong bong>

The Final Jeopardy question is:  How long until scientists find a cure?  That is the life change I really want.

We are in negotiations with the doctor’s office about Saturday’s dose.  Marty and I want to do it, but the rheumatologist is thinking we go back to Kineret on Tuesday.  I don’t want to go back to Kineret at all.  It wasn’t taking care of the inflammation, why start it again then have to go through another wash out period?  If we’re going to go to a third biologic, why mess with Kineret?  And if we decide on a third one, we won’t have it in hand to give him on Tuesday anyway (unless it’s an infusion, in which case I still don’t know if it would be available.)

I want to get this figured out.  Now.  I want him feeling better before school starts, which is also Marty’s main concern.  I don’t want him constantly inflamed, which inhibits his growth.  He is already the shortest kid in his school, and I would like him to at least approach 5 feet before he starts high school in a year.

What I really want is my healthy boy back, but I’m afraid to ask for that.

Before I even had the chance to give him the bad news, he told me he wanted to go back to the Kineret. We discussed it for a few minutes before I told him the rheumatologist also wants him to switch back. He said part of the reason he didn’t like Enbrel is that it gives him hope.

After a few more minutes of discussion I found out the source of the problem. He doesn’t like being disappointed when he doesn’t feel better like everyone had hoped. My teenage son would rather stick with a treatment that sort of works than to risk being let down thinking it might get better but it doesn’t. How sad is that?

I am waiting on a callback from the nurse who had instructions to work us in ASAP. With a little luck that will be before the rheumatologist wants Marty to actually start back on the Kineret.

I’ve had enough. I’m just numb.

I made a comment that she was fast, but Marty didn’t realize what I meant. Honestly I don’t think he was listening. After she withdrew the needle and told him to hold the gauze he finally realized she had already drawn his blood. By this time both kids were getting pretty silly and Bella had a good laugh about his cluelessness. Turns out the only thing that hurt him today was taking off the bandaid.

In other news, his eyes are clear, his chest X-ray looked good, and we saw another JA mom while we were there. Marty enjoyed his favorite stir-fry and Bella fed half of her popcorn to the birds and a squirrel. We should hear about the lab results and his inflammation levels tomorrow.

I am thankful tonight not only for the expert hands during venipuncture, but also for the eye doctor that offered suggestions for Marty’s light sensitivity, the PA who made sure we got our prescription and other orders, and the Target pharmacist who goes above and beyond to make sure we have what we need and know how to use it. I also appreciate my online JA/rheumatology family who have offered suggestions and support during our recent medication switch. I am extremely grateful to the Masonic Lodge for providing services to children in need, and the volunteers who both raise funds and staff many clinic positions.

This is a good day to be Marty and Bella’s mom.

Marty switched from Kineret to Enbrel about a month ago because his inflammation wasn’t well controlled. He hadn’t had any systemic symptoms for over a year and a half, but when you switch from a systemic medicine to one approved for polyarticular, the return of systemic symptoms is always a possibility.

He has been making comments that he doesn’t think the Enbrel is working, but I thought maybe it just wasn’t strong enough. Today he admitted he has had some brief chest pains, and I noticed a large swelling on his wrist. OK, now I’m convinced.

It looks like we will have to discuss other options this week. This isn’t a conversation we can have from two states away. Seems like God really does know best.