Counting My Blessings

I just feel such a strong need today to count my blessings. It is very easy with a chronically ill child to be angry and hateful. It's something that unless you are or have lived it, you simply can't understand. Most times I wish more than anything that we didn't have to know what it's like. Some days I get very angry with God for doing this to us. I get very angry with the disease for raging through my sweet Beanz body and wreaking havoc on it. Then there are days like today. I know that God has a plan and a purpose for every single one of us. I know that He loves my Bean. He isn't doing this to hurt her or to punish her. Instead it is to use her and me through her. It is my life's purpose, because of what is happening to my child, to educate myself and then educate the world to the best of my abilities. I thank God for that. It has also I know given Bean a strength that she otherwise wouldn't know. It gives her siblings compassion and understanding that they otherwise wouldn't have.

We are also very blessed that Bean, despite all that she does go through, could be much worse. I have been so fortunate to connect with other JA Moms and we all share our stories with each other, many of them now with the world via blogs. A great number of these children still have not found the right med, combo of meds and or dosage of meds. Many of them struggled just to get the diagnosis. Too many of them are having their vital organs attacked either by the disease itself or by the medications they are taking to treat the disease. Some have already had surgeries on their joints and now have more scheduled. Some of them have had to have joint replacement....IN A CHILD! Way too many of them simply cannot get the Uveitis to go away and stay away and now have permanently damaged eyes. Their eyes!!! They are just babies for crying out loud!

So please, take a moment today, and count your blessings.....

We Got to See Dr. Pirone Yesterday :)

Dr. Pirone is the first optometrist that saw Jenna and diagnosed her with Anterior Uveitis. We LOVE her. She has rheumatoid arthritis herself so she is very knowledgeable of the disease as well as so compassionate. She is so kind and gentle with Jenna. When the cells continued to multiply at a rapid rate that is when she recommended we see an opthamologist because it was beyond what she could help us with. Now that Dr. Foster has gotten the Uveitis under control we can do follow ups with Dr. Pirone. YAY!
So it was a good appointment. Still all clear! No pressure check. *sigh* She is still so freaked out by that. I don't know what we are going to do to get them checked. BUT...she said everything looks good for now. We know what to look for and if we start to see signs we will bring her right in.
A friend of ours that has a son with JRA and Uveitis had their routine 8 week follow up with Dr. Foster yesterday. Unfortunately for them it was not good news. His eyes have been quiet and off drops since last July with good pressure readings. All good right? Apparently no. He has developed a cataract in his left eye. A very big wake up call for all of us. It was our understanding that cataracts was caused by extended use of drops and or high pressures. It seems as though the damage left behind by Uveitis can cause cataracts as well. So please add our friend Jake to your prayers. We would appreciate it.
On another note...Jennas joints are already starting to swell and ache again. Not good but we are watching closely. We were really hoping for this latest MTX increase to last longer than this! Only worked for about a month. COULD be the lousy, cold, damp weather we have been having. I don't know. Time will tell.
As always...thanks for reading!