I just can't believe it........

Up until yesterday I was still in denial of Bella being diagnosed with an auto immune disease. I was always hoping that the next appointment would be the one where they tell me they were mistaken and they had the diagnosis wrong. Guess what, it's real and not going anywhere. I told my daughter's principal yesterday that I finally have accepted it (kind of) and let's move forward with her 504 plan (disability paperwork for school). It took me 2 months to finally accept the diagnosis. I don't like it and I don't want it.....BUT it is here.......time to put my big girl panties on and deal with it, right?!?!?

Well, until the doctor made it really REAL today. The moment I realized there is no turning back is when the doctor stated that Bella needed to start on  medication called Methotrexate a chemotherapy drug. Yes, chemotherapy is used in Arthritis patients, shocking to me too! I'm going to try and explain it to you as it was explained to me because I am having a hard time wrapping my mind around it. Chemotherapy is used for children with juvenile arthritis to slow the progression of the disease. They want to slow down the damage the JA is doing to her body. Right now her body is fighting itself and causing more issues that could lead to irreversible problems. So, we are "tricking" her body into believing that her immune system isn't the enemy anymore. CONFUSING, I know!!!!
So Bella will have to take 5 pills once a week and will likely be transitioned to the shots(because they are truly more effective). They will also have her on folic acid to reduce the side effects of chemo. , So, she is on Methotrexate once a week, Folic Acid once a day, Naprosyn twice a day, daily vitamin daily, and Tylenol. Quite a pill box for such a little girl. This is another attempt at trying to slow down the progression of her disease in hopes that one day soon she will be in remission.

The doctor also told us that she has Psoriasis too. She had these pin marks in her nails and a rash. I forget all the technical details, that is why I took Dan along(he gets the technical stuff). Dan will also remember the stuff I forgot. So, now we have that to add Psoriasis to the list of problems.

The doctor noticed that her back now has a slight curve in it and will monitor the back for any changes. Her fingers are now being effected and the doctor noticed changes since the last appointment two months ago. She also stated that some of Bella's pain in her ankle and knees may be from her being flat footed. The arthritis and being flat footed aren't a good combo. She also noticed that Bella's left shoulder and hip are higher than the right side......so we will work with the physical therapist to hopefully straighten her our a bit.
We got the same lecture about keeping her active, but not too active. If she is in pain to rest. The doctor doesn't want her running because it is too rough on her joints. But wants her to enjoy some sports.....it's so confusing!!!
I'm sure I forgot some of the other details the doctor explained....but for now this is all I could wrap my brain around.
We asked all the questions we could think of and got the details we need for now. So now we start the next part of this journey (thanks for that word Anjie). We are nervous, scared, and confused. But WE ARE IN THIS TOGETHER(my favorite phrase for our family and the 4 other families dealing with medical issues right now) and we will fight along side Bella!