Hashimotos, central hypothyroidism, lupus, rheumatoid arthritis, CREST syndrome, and now...multiple sclerosis. Tomorrow's MRI will take 2 hours. Then a week for the results. The waiting and the testing has lasted over a year. The diets and medications have been over two years. The most difficult part is waiting. Anger, frustration, sadness, uncertainty (this is the hardest for a Type A like me) take over some days. And then there are days when you meet the right doctor, or read about a new break through in research, or someone comes along and says just the right thing. Those days are filled with hope and encouragement. Those days help me make it through the roller coaster of symptoms.
Anna, my little artist, wanted to paint the mad hatter. So we made his hat instead. That's when it came to me. "Maddening!" It has been impossible trying to explain the feelings associated with autoimmune disease and the process of receiving the accurate diagnosis. In a nutshell, combining all of the emotions, it's simply maddening.
The uncertainty is the worst. Not knowing if my hands will eventually be crippled and I won't hold a camera again. Not knowing how much I will be able to participate in my children's lives, not knowing how my children will view their mom. "My mom doesn't take me to my practices," "My mom missed my game again," "My mom missed my art show." "My mom doesn't come help out at my school like my friend's moms do." Of course I know it won't be my fault-although at the same time those thoughts my girls may have will be because of me. I also know that I still do more than many parents out there. Knowing this doesn't make it any easier, though. So for now I soak up the pretty good days and accomplish as much as I can. I clean the house more, try to reconnect with my friends, and spend more time with my girls. On the bad days my husband picks up my slack while I fill up with guilt. Until next week, and very likely the follow up tests, that will occur I try and hide the mad hatter's hat.