So needless to say I did not take my Benadryl last night, even though my allergies were bothering me. It made this morning much easier getting my IV in place. I always try to make conversations with some of the other infusion patients in the room with me. It began as an inquiry process. I was talking to the people in the infusion room with me because I was curious to find out if anybody else was on the same medication. I wanted to find someone else on Benlysta so I could compare stories. After finding a couple people that were on the medication, I felt that I had enough information to find comfort in my "new and unknown" adventurous medication. Then I began to make conversation to pass the time. Now, it's almost like a therapy session. It's nice to find people that understand what you're going through. But I also think it's nice to give my advice to other people who are beginning their journey. Two and a half years on my medication and six and a half years into my lupus diagnosis and I feel knowledgable. I have a grip on my life and disease....don't get me wrong, a grip does not mean that I feel perfectly. Today I talked to a young girl, 25, who had just been diagnosed two months ago. Her name was Tristan. I hope that I passed on a few words of wisdom. I told her that although chronic illnesses are scary, they can also be a blessing. I told her that it took me five years to get things settled and find the right medication but that there is hope and at the end of the rainbow I now see my lupus as a gift. I feel like it's given me compassion towards others and more understanding in this lifetime. Life is short and we are all going to die. That's life, but somehow having a chronic illness can make you see things for what they are. Important and brief. You deal with what you aregiven because you don't have any choice. You have to be strong. I prayed for her before I left today. I truly hope that it what she needed today to feel like this is something she can do, something she can get through.
My family has also had some stuff going on this week. My grandfather went into the hospital on Monday and had a pacemaker put in. This was not planned, but probably saved his life. This made me realize that maybe it was time for me to go back home for my infusions. This means driving six hours there, staying two days to sleep and then driving six hours back, while my kids stay home here with my husband. This will make things a little more difficult, but it will give me more rest. It will also give me more time with my family. I don't guess that's anything I would trade...not for all the driving in the world or all the money in the world. My family puts the "us" in lupus, they make my life worth living and fighting through.