Hell Hath No Fury

Hell hath no fury like a mother scorned and fighting for her child.

Right now, "furious" is such an understatement.

Our eldest child, Mia, who was diagnosed with juvenile arthritis (or, a more precise name for it would be - autoimmune arthritis), has been complaining of pain in her left knee..again. She has severe pain behind the knee and the joint is very hot. We have been down this road many times already. I know the signs. I am no dummy. And, I refuse to sit around and wait for a doctor to finally decide what to do.

Mia was too young to remember. So, this time around is a bit different for her. She doesn't remember the leg braces, the MRIs, the ultrasounds, the x-rays. She doesn't remember the endless times she had to sit on her father's lap, while he held her down and she screamed and cried because it was time for another round of blood work. Up until now, Mia has never questioned why she has had to take NSAIDS every day since she was 22 months old.  She just takes her medicine. Every day. No complaints. Bravest and strongest girl ever.

And, as a Team Against Juvenile Arthritis, we have always been in the "it's-time-for-medince" routine. However, she finally asked me last month, "Mumma, why do I have to take medicine every day? And, when can I stop? Will I take medicine two times a day forever?"  I was a bit blindsided when she actually asked me, "Why?"  When things look and feel good because flares are being controlled with medicine, it is hard for a child and others (friends and family) to realize there is something wrong. That's one of the many hard parts of this disease. And, only because my husband and I are so "in tune" with what to watch for that it become frustrating for us when we can clearly see something is wrong and we hear someone say, "Gosh...she looks fine to me." (The only exception to this is our other JA friends. They know what flares look like....even if they start out small). 

All this to say, as hard as it is and as emotional as it can be for both you and your child, you have to press on....even when on the outside everything seems "okay." You have to continue to administer meds because if you are not consistent, flares happen. And, they happen fast. 

And, you have to fight for your child, even when the doctor is giving you the lamest solution on how to temporarily "fix" a flare.

Right now, I am dealing with a whole other bag of frustration - "What do you do when your child's doctor is not being proactive to prevent a flare??"

Seriously, Dr. X?? You think a TOPICAL NUMBING GEL is going to make her pain and swelling go away? You are providing a temporary, "quick fix" that is going to wear off and we'll be right back where we started. Give me a break!! We have been down this road before with Mia - several times. We know what it means when her knee looks like this:

And, going even further, she has been on NSAIDS for over FOUR YEARS. I know from first-hand experience what taking NSAIDS can do to ones stomach. It tears it up! Not to mention, it is yet another "temporary fix"; a way to try to control the swelling and pain and not getting to the root of the problem. 

So, what is the next step? I don't know.

How do I provide an immediate fix for her? I don't know.

Will our rheum respond with a more helpful solution? I don't know.

Furiously and impatiently, I wait.