Part Two: The Testimony

If you haven't read about Naomi's arthritis journey so far, you can pop back a post and read about how we came to be in this juvenile arthritis world. I wrote it to lay some groundwork for this post. The work that goes into getting a med change approved through insurance, supplemental insurance, pharmacy -- all coordinated through the hospital.  Once this massive machine is up and running, though, you forget all of the work and things run like clockwork. Until there is a change.

In July of this year, we got a letter in the mail that Jerry's prescription insurance is changing carriers effective August 1. It said in the letter that this would hardly affect us, we would probably not even notice the change in carrier. Except I knew. I've had to explain the medical history so many times, I didn't think for a minute that this wouldn't affect us. So obviously I sat on my bed and cried. It's often one of my first steps in dealing. 

We made it through the change rather unscathed. I mean, I spent hours talking to new insurance carrier, and they of course didn't have actual information until August 1 when the coverage started. And I talked to their normal department. They told me I would have to get Naomi's medication through the mail order because they considered it a maintenance medication. (Yes. They told me Humira for a ten year old was considered a maintenance medication. No. I didn't scream.) I talked to their mail order department, who although have heard of Humira, weren't sure that it would have to be a mail order prescription. They then sent me on to the specialty department. Each time, I get to explain the medication, the history. And generally, I get transferred to a different department.

Shortly after the transition in August, I got another letter that they would only cover it in 90-day supply. I asked if that was accurate. It is a concern for us, because the arthritis insurance is a branch of medicaid and they ONLY cover 30 day supplies. One representative told me it didn't matter, this was her primary insurance and what they say is how it will go. I let her know that I was uncomfortable housing $10,000 worth of Humira in my fridge. What if we lost power? (We have a generator, so that was more rhetorical.) What if my fridge breaks? Humira has to remain refrigerated until 30 minutes before the shot. But back to the biggest factor - I AM UNCOMFORTABLE HOUSING $10,000 WORTH OF MEDICATION IN MY FRIDGE.

That got worked out. A nice man let me know that no, it is not a maintenance drug (right?!!??!), and that they will continue covering it as a 30-day refill. 

Then last week, we get another letter.

Our coverage is changing, and they would like us to change our medication from Humira to..... "contact your physician."

First step, I called the insurance company. The lady I spoke to was very nice. She ran a practice claim through to see what this would mean for us. There was no information. All she could see was that it would require a prior authorization on January 1. There was no way to see what it was in regards to, we would have to wait until January 1.

So I called the hospital and I called her arthritis insurance. Because if you ever want to understand what's going on in the insurance world, the ladies that deal with it daily are a glorious wealth of information.

From this letter, it would seem that maybe they are just going to increase the copay? That's one guess. I asked if it would affect her if that was all it was. The U of M nurse said that her arthritis insurance only covers what her primary also covers. If our insurance decides she can't have Humira, then that's it. She doesn't get Humira. The only other option for her at this point is a drug that is by infusion. An IV med that requires a half day appointment at U of M. Neither of us understood why they would think that was better.  I asked her what I could do (she's the insurance ninja). She said you become an advocate. Call your representatives. Call your senator. Call anyone you can. And ask for insurance reform.  Write letters, make phone calls, contact offices.

Except I'm tired. And I don't really know a lot about all of the politics that go into insurance. If I absolutely had to, I'm sure that is exactly what I would do. But that is not what I wanted to do. 

Then yesterday.  I was cleaning my house, because that makes me very happy. I was sweeping my kitchen and praying. I let God know that I did not want to be an insurance advocate. I didn't want this to be how I spend my time. I know it's important, but please, not me Lord. Please don't let this be Your will for me. I know I'm being called to something, but please don't let it be insurance reform activist. 

Then my mailman came and beeped his horn. When we have a delivery, he drives up the driveway and beeps and drops off the package and the mail. So I stopped sweeping and grabbed our mail.

On top was a letter. From the prescription insurance carrier. 

And I set it on the counter.

I couldn't bring myself to open it. I was praying for an answer, and I wanted to make sure that God heard my actual prayer? Maybe I wasn't clear....  The last thing I wanted to do was read what these jerk faces had to say (as a general term regarding the insurance carrier - their employees have been quite pleasant).

So I prayed more, and I mopped.  Please don't let this be Your will for me. I don't have the energy to learn how to do this. Use me in a different way.

After I finished mopping, I opened the letter. I had to know what else they were going to throw at me. I was ready.

I stood in my kitchen and openly wept. My face in my hands, weeping. Please disregard the previous letter because your plan will continue to cover this medication. We apologize for any inconvenience this may have caused. 

I was literally praying to God to stop this, don't let this be our path. And I was handed a letter during my prayers with the exact answer. The timing took my breath away. The greatness made me cry, a lot. 

I don't even know if maybe down the road, insurance advocate will be my role. I'll do what is needed, when needed. But thank you, Jesus, the answer is "not now."  

I knew I had to share this. The timing of the answer was perfect. God's perfect timing. Lord, hear our prayers.

Naomi's Arthritis Journey

Something most people know about our family is that our oldest daughter, Naomi, has arthritis.  She is now ten years old, but she was diagnosed eight and a half years ago when she was just 19 months old.  It was certainly an unexpected path in our life, and she has dealt with it like a champ. When she was first diagnosed, along with medication she also was prescribed physical therapy. She soon became the favorite in the clinic - not even two years old, working on her mobility.  They would set up little obstacle courses for her to maneuver through and, my favorite, would put her in a harness to take some of her weight off of her legs and have her walk on a treadmill. Although she often went along with the treatments, there would be times where she would just lift her tiny little legs and hover in the harness above the treadmill.  The challenges of an almost-two-year-old in physical therapy.

Naomi, the month she was diagnosed with juvenile arthritis

The first medication she was prescribed was Naproxen. It is a common anti-inflammatory drug, and it came in liquid form so she could drink it just like children's tylenol.  Within a week of her taking this, her mobility increased dramatically.  She would get out of bed and walk, instead of it taking until lunch time before she took her first step of the day.  We were amazed at the miracles of the medication, and were so very hopeful that she had the type of juvenile arthritis that she would eventually grow out of.

Three months on this medication, we had her routine bloodwork done.  It was then we found out her Naproxen was causing an undetected stomach bleed.  We were sent to U of M Mott Children's hospital (where her rheumatologist is) so she could receive a blood transfusion. She was 22 months old, and I watched my baby have a blood transfusion. This world of arthritis was bizarre and scary.  It was decided during that hospital stay that she would come back later in the week for arthrocentesis (a big word for "joint tap" - they would draw out the fluid on her knees and ankles with a needle and inject steroids directly into the joints).  And obviously we were due for a med change.  

It was after this hospital stay that we made the choice to move on to methotrexate.  In large doses, it is a chemotherapy drug. In small doses, it is an anti-inflammatory. This was my first experience realizing the power that insurance companies have over treatment.  Her doctor at the time was the head of rheumatology at the University of Michigan.  I trusted her with the treatment of my daughter. She explained the how and why of methotrexate, and that for decades it has been used in this way.  After the insane week of blood transfusions and arthrocentesis (and kindergarten open house for our oldest, and I was 8 months pregnant with twins....) I went in to Rite Aid to fill her new prescription. The new one that would not cause a stomach bleed.  And it was then that the pharmacy tech told me that it was denied. The dose of this chemotherapy drug was not correct, so the insurance company would not approve it. 

My world stopped. I couldn't believe what I was hearing. I must have heard wrong.  I got loud with him, asked who at the insurance company I could talk to, who there knows more about this condition than the head of rheumatology.  Then I cried. And apologized. Because this young kid had absolutely nothing to do with it. So I wrote down everything he said, and I called the hospital. I was introduced to the world of prior authorizations and insurance hoops. I heard that it will be covered, we just need to do more paperwork. This is normal. NORMAL. Because Naomi has arthritis, she qualifies for Children's Special Health Care Services - a supplemental insurance that we pay for to cover anything arthritis related. It has been an immense blessing!!! And it also increases the amount of insurance leg work, because as I soon found out once things are approved through the primary insurance, the exact same process then has to happen with the supplemental.

The nurse was correct - the medication was covered and we soon had it in hand. It was a weekly injection, and unfortunately carried some side effects of it being a chemo drug.  It made her nauseated for a couple days. Each week.  Plus, the trauma of having a shot every week.  The whole situation was heartbreaking.  She would often cry so hard that she would throw up during the shot. We then started giving it to her in the bathroom so she could throw up in the toilet.  I would cry, she would cry, Jerry would pray over her. But it worked. Her arthritis got even better. So much so that she was free and clear from arthritis and we were able to wean her off of her methotrexate.  

Three months after her final shot of methotrexate, her knee blew up in a flare-up. We had already fought this battle and won. And I cannot explain the defeat and devastation of hearing it was back. The fight continued. The doctor still hoped that methotrexate would be enough to cure her of the arthritis, but next time we would have to wean off slower.  Two more times, we would hear that she was free and clear, and two more times while weaning off of her methotrexate injections her arthritis would flare back up. We knew that the arthritis could be controlled with methotrexate - even with the terrible side effects. But we also knew that it would never cure her. 

There were several other setbacks during her years of dealing with arthritis. Early on, because of her swollen fingers and toes, it was determined that she has psoriatic arthritis. It didn't change anything, but if there are "sausage digits" (I am absolutely not joking that that's what they are called. Trust me. I laughed, too), it means that it is this certain type of arthritis. When they mentioned psoriatic and asked if she ever had psoriasis spots, I realized that she was too old for cradle cap - so that's what was on her scalp.  If she would have a bad flare-up, the plaque psoriasis on her scalp would get worse, often causing hair loss.  When she was four years old, I realized that she always only mashed her food with her tongue in a very odd way. At four, she had an MRI (coupled with another arthrocentesis, since she was already under) and found out she had past arthritis in her jaw causing a small jaw. That appointment led us to a maxillofacial surgeon who deals with facial abnormalities. Which led to a sleep study. Which led to her tonsils and adenoids being removed. She also gets uveitis with her arthritis, which is inflammation in her eyes. She goes to an ophthalmologist every 3-4 months to make sure her eyes are ok. Uveitis untreated can lead to blindness. More recently she had another sleep study, which still showed apnea. So she now goes to the orthodontist and had a palatal expander to help increase the breathing space (and make room in her "very small jaw" for her "very large teeth"). Through it all, she has been so brave and such a strong person. 

After finishing her first 5k race

Honestly, so brave and strong. She ran a 5k race. My little girl with arthritis. Wearing her arthritis camp tshirt. Ran a 5k race. She was eight years old.

But I digress. Through all of this, we knew that methotrexate would control her arthritis but would not be the medication to clear her of it for good. New choices are scary. It is hard to be a parent making these choices for a child. It is surreal to sit in an office and ask "Will this affect her fertility?" She's 10. But we ask, because we have to know. The medication that we decided on is Humira. It is a biologic, it works higher up the immune system chain, and carries greater risks. And it works. Way better. Writing it all out, it seems like the decision to switch to Humira was a no brainer and I feel guilty for not choosing it earlier. However, because it works higher up the immune system chain, it means she is now even more immunosuppressed. She can and will catch anything that is going around, and her system will have a harder time fighting it. Things can get serious, fast. Also, there is a theoretical hypothetical increase of cancer with this new medication. It doesn't matter that the actual data shows that the increase isn't experienced in children. When a doctor tells you the option has an increase chance of cancer, you pretty much just say no thanks. Also, this shot hurts. The medication actually burns as it is injected. Due to all of her contraindications, most other arthritis medication options were off the table. Some are known to not help uveitis. Some aren't effective with psoriatic arthritis. We finally made the decision this past summer to switch to Humira.  

Even with all of our insurance experience in the past, and even though the nurse warned me it takes some time to get this med approved, I naively thought it wouldn't be so bad.

I was wrong.

It took over a month from the time the prescription was written to the time I was able to get it from Rite Aid. I am forever grateful for the amazing nurse that works at U of M. Nurse Anne is like an insurance ninja. Plus she knows and teaches the kids Tae Kwon Do at arthritis camp, so she is also a real life ninja. The nurse at Children's Special Health Care Services, Elaine, is also an angel. She works magic. Her job is coordinating the insurance through the State. Pure magic. The medication itself is insanely expensive. Rite Aid would not even order it until they knew that the insurances would cover it, because it is too expensive to keep on hand. I am pretty sure the cost is $1,500 per shot. And she gets them every other week. I am forever thankful for insurance, while simultaneously hating the power and the hoops they hold over patients. For weeks, I would make phone calls. Call the hospital, see where they are in the process. Call the insurance company - what other info do they need? Call Rite Aid. Call CSHCS. Then call the hospital again. My brain would just spin at how broken the system is and how hard it is to get what is needed. The fight to get injectable lidocaine took even more phone calls - I even called the manufacturer. It is incredibly difficult to get ahold of it. I finally, two months after the prescription was written, was able to get it filled at the U of M Hospital. By that point, driving an hour each way to pick up a prescription was absolutely worth it.

And now we stand on this side of all of that. This medication works so well. She doesn't get sick from it. For the very first time, since she was 19 months old, when we went to her ophthalmologist appointment he saw ZERO floating white blood cells (the indicator of inflammation). He has always seen at least a couple in there, even without a flare-up. She has no pain in her knees. She doesn't complain about joints hurting. And, thank God, there have been no indications so far of any of the possible negative effects of the drug. She plays outside in the snow. She cheers on an Upward cheer team. And she is so very very beautiful.  I have a testimony to share from yesterday regarding her medication and insurance, but I realized her history creates the background. 

Going through this does not mean we are superhero parents. I truly believe when you are faced with these situations, you just do whatever you need to for your child. We were handed some difficult tasks. It has been hard, emotional, and draining. And I would still do this every single day and fight for my daughter, because that's what parents do. Not because I am super mom, but because I am a mom. I suppose I am sharing for awareness. There is a lot that goes into any diagnosis. We have seen miracles, and we have faced heartbreak, and every child with juvenile arthritis has their very own story. Similar in so many ways, and so very different. I have met some fierce warrior moms, fighting this fight. None of them seeking praises. All of us praying for a cure. 

This is arthritis.

Photo Cred: Six Arrows Photography

New Year's Resolution

"Mom? Do you ever do anything fun?"

The other night at bed time, my youngest son turned and asked me those very words.  I'm used to many questions at bed time.  But this one threw me a bit.  I wasn't sure how to answer - snide sarcasm, angry bedtime mom, surprised defiance.... so I went with the tried and true, "What, honey?"

"Do you ever do anything fun?"

Ah, I see. I didn't, in fact, mishear you....

"I mean, you drink coffee.  And you check your tablet.  But you know, do you ever do... fun things?"

Right.  Well.  I, uh... I played Go Hogwarts with you today (Go Fish, with Harry Potter playing cards).  I, um, loaded the dishwasher. And my laundry is finished....

And thus began my existential crisis.  My seven year old saw my life and thought, 'Wow... this is pretty sad.'  If eyes are the windows to your soul, I would like to suggest that your children's mouths are mirrors to your life.  They pull no punches, and they see all.  

I managed through the rest of bed time. The timing of his question was truly uncanny.  Here it is, so close to New Year's Day that I have a list of resolutions bouncing around in my brain, just waiting to make it onto paper.  Great ones.  "Get healthy - physically, emotionally, spiritually!" "Maintain a clean house!" "Stay up to date balancing the checkbook!" (I've never claimed I was exciting...)  But now, instead of figuring out how to write these resolutions in my best handwriting on my fun notebook paper, I'm facing the unending depths of my child's question.  Do I ever do anything fun? Do I? What do I even like to do? Who am I, and who have I become?  

The beauty of all of this is that the question was asked very innocently. Which makes it all the more enlightening, honestly.  

So I've made my New Year's Resolution.

Do something fun.

It seems simple enough. 

Except....

Except not when you are a perfectionist.  Please know that I am not claiming that I do things perfectly.  Being a perfectionist isn't some great thing that gives amazing results.  What it IS is often paralyzing, procrastinating, never actually finishing anything, because finished results can be found to be imperfect. 

Added on top of that is this neat, rigid rule that my brain has where fun things are a reward for finishing the "not fun" stuff, like responsibilities and lame resolutions.  

You can probably see where this is going....  So somewhere in the inner workings of my brain, it tells the rest of my brain that I don't get to do the fun reward because I have not finished my To Do list.  Oh, did I mention that I am also queen of Unrealistic Expectations? Yep. That's me.  

Making this resolution may seem a bit lame.  I get it.  And inner brain me is celebrating because it thinks that it means that I will FINALLY finish my other resolutions from the past 37 years. 

But I'm hoping it means that this is the year that I finally take time to do something I enjoy, regardless of where I am on any of those other tasks. This is the year that I finally do a jigsaw puzzle. That I finally read a book for enjoyment. Maybe I'll even learn hand lettering (it's like calligraphy - you should totally check it out)!

And maybe next year my resolution will be "Redefine FUN" - because admittedly I'm pretty lame.  Eh, baby steps....