I try, despite how it may look on this blog, to stay positive while dealing with all the crap that Sjogren’s entails. However today I will rant.
I witnessed an amazing family watch their 18 month old son dying in the PICU yesterday without any warning, rhyme or reason. I’ve known the mom for years and photographed them as a family from the baby shower to yesterday – including their wedding last month. And I just want to feel the tears falling as I grieve for them and I can’t because this stupid disease has stolen even that small solace and relief. I never realized how much of a release crying could be until I couldn’t do it. I hate this disease. I get a runny nose and burning eyes and that’s it. Stupid modern medicine can’t help me make tears and it wasn’t able to tell them why their healthy 18 month old simply stopped breathing Sat afternoon and became an Angel on Sunday.
All I want to do after yesterday, other than cry, is to hold onto my children and tell them how much I love them. Unfortunately they got out of school on Friday for the holidays and are with their dad until noon on Christmas day. That’s a long time to go without hugging my kids after yesterday. I texted their dad yesterday when we got the news that my friend’s baby would not be coming back from this and told him what was going on (he doesn’t know this family but he was sympathetic in his reply text) and told him I was too upset to talk to the kids – I knew they didn’t need me blubbering on the phone – but to please tell them that I loved them more than anything in the world. He did so and replied that they said they loved me, too. But I still have to wait until Christmas to hold them for myself.
I had a very positive appointment in Philly last week and am starting to receive the electronic results from the lab work they did while I was there. Despite my last two rheumatologists basically throwing up their arms and saying they were going to nothing different to treat me and to just “come back in 4 months to follow-up” I’ve continued to decrease. I’ve watched my ESR (“sed rate” – measures inflammation in the body) climb over the years as well as my Rheumatoid Factor. Today they came in with a ESR of 108 (should be between 0 and 29) and a Rf of 516 (should also be between 0 and 29). I’m angry that doctors just told me to stay on the same medicine that wasn’t working and basically wrote off how all my symptoms were impacting my life and just told me to come back – what the hell would I come back for? For them to do the same thing – write off my symptoms tell me to stay on the same meds and come back in another 4 months?