{Part Four} Lily’s Journey with Juvenile Arthritis


Lily Juvenile Arthritis Part 4When I left you last, Lily had just began methotrexate, and was having a rough time. Luckily for us, she was one of the fortunate ones who was able to somewhat adapt to the meds. After a while, the sickness with each dose stopped. Saturdays were still days of extreme tiredness post shot, but as long as we administered the shot in the morning, she wouldn’t get physically ill.

For the next 3 years, Lily had moved into the category of “medical remission”. What is that, you ask? Honestly, I don’t even know if it is a true “medical term”. Medical remission is what we refer to as signs and symptoms of a disease are minimally apparent as long as you are on a prescribed drug. With the drug combo she was on, 90% of the year Lily was basically pain and swelling free.  Each year, in January, she would go through one or two rounds of swelling in her knee joints. It would last about 2 weeks and between her meds and body fighting, we would usually move past the flare with ease.

Now, just because there wasn’t any fluid in her joints doesn’t mean she didn’t suffer in other ways.

There are so many aspects to a chronic illness. Those who have not gone through something similar struggle wrapping their arms around everything associated with it. Accompanying the illness, pain, doctors’ appointments, blood draws, and all the medications came a nasty case of anxiety for Lily.  She would regularly break down (have panic attacks) in her classroom for no apparent reason (that we could see). When I think back to how things all worked out, I realized there must be a greater power than us planning this all. We were extremely lucky that Lily had Aubrey, her twin, in class with her. At those times, Aubrey was the only one who could get through to Lily and calm her down.

The twin’s kindergarten teacher was exceptional. She would call me with updates, talk to the guidance counselor, and try to talk Lily down when she would get agitated. With 20 other kids in the room, I am so thankful that we had such a caring, understanding and patient woman in her life at that time. The school was wonderful in helping Lily with pictures of people who could help her if she started to feel anxious (so she could find them easily). They would also let Aubrey talk to her alone in a section of the room, if need be. And lastly, they would call me. We also gave her a silicone bracelet that she would rub if she would get anxious. I wore the exact same one every day, so she knew we were connected. We made it through—but that anxiety has stayed with her over the course of this illness.

In addition to mental changes, the drug also made Lily “immunosuppressed”. This meant that she could [and would] catch every darn sickness that came into the school and house. One of the worst things that she had to deal with was Melescum. Melescum is a virus that is easily spread. You can catch it just by coming in contact with the virus (public restrooms, shopping carts, etc).Lily's Journey Part 4

Poor Lily somehow got it, and it was awful. She got it on the insides of her thighs. The virus is nasty. It is painfully itchy—but the catch is—when the small pearl colored pimple like sore opens (if you scratch it), the virus spreads. It ends up being like a nasty case of chicken pox that you can’t get rid of. We had to wash sheets daily make sure she didn’t sit directly on any furniture, etc. Finally, we ended up in the dermatologist’s office again.  They used liquid nitrogen to freeze each one of the pustules off.

Again with the screaming. Again with the tears. Again with the “Why am I the only one who has to do this”. Add in anxiety for EVERY single doctor appointment that we had to go to now (since most included some sort of shot or blood draw [ie pain].  And, of course, again with the feeling of helplessness and mom guilt, which at this point, I was beginning to realize was here to stay with me, as well.

Anne is a mother of 3 girls—twin 10 year olds and a 5 year old. She lives in Ledgeview with her husband Steve, their three girls, and their dog Daisy. She attended UW-Milwaukee and received a degree in Clinical Laboratory Science with minors in Chemistry and Nutrition. After having twins and staying home for 3 years, she somewhat fell into a position as a Coordinator of a non-profit adult literacy group, and has been working part time from home for the past 7 years.  She enjoys chatting with friends, cake decorating, volunteering at school, helping coach softball and is continuously getting reigned into new projects within the groups she volunteers for. With one of her daughters being diagnosed with juvenile arthritis at age 4, the Arthritis Foundation has become a huge influence in the Laurent family’s household.