Everyone knows about my very stressful week that resulted in huge doses of extra meds, including steroids, and multiple doses of epi to keep me safe. So by the time Thursday rolled around, I was seriously hurting, and not in a metaphorical way. I was literally hurting and exhausted and my skin hurt and my GI tract was bleeding and being generally obnoxious. I was hoping that I would make it through this wedding but I was really not sure it was going to happen.
Thursday night was the rehearsal dinner. I put on my best rockabilly dress and infused on the way over to the church. I stood outside the stone church and enjoyed the cool weather and soft breeze. We went into the church and practiced walking down the aisle. (I consider myself an expert walker.) I took steroids and went to the dinner. I got home at a reasonable time but the steroids guaranteed I couldn’t sleep. I fell asleep sometime around 4:30.
We left at 8am to drive over to the hotel to get ready. I took a ton of extra meds and hooked up a fluid infusion to try and stay hydrated. The stylists made my hair very beautiful while discussing my obvious health issues in French. (Surprise! My spoken French is bad, my understood French is pretty good.) And then suddenly it was time to put on my dress and go to the church. I was mostly functioning on adrenalin at this point (natural, not Epipen) and very grateful for that.
We went to the church, walked down the aisle and my cousin married his wonderful, kind bride, who is one of my favorite people. It went off without a hitch and was amazing. We took pictures and climbed into the limo to head to the reception, where we took more pictures. Then we had a huge party that I will remember forever as one of the best parties I have ever been to.
The wedding was at 2, the reception started at 5 and by 7, I felt like I was going to pass out. My body was starting to seriously lose it. I was having low level anaphylaxis and feeling generally miserable. I really wanted to go home and go to bed.
But I wanted to be at my cousin’s wedding more so I rallied and danced and sang loudly and then went out to the firepits and toasted marshmallows and made smores. (Side note: everyone thinks they can dance at weddings until they go to a dance where many of the guests are professional dancers.) By the time it was time to leave, I had to be helped into the car and my friends had to literally help me out of my dress at home. I was in that much pain.
I write a lot about how frustrating my disease is and how people often insult me or make my life difficult with their actions. This is not one of those stories. I am regularly overwhelmed by the kindness I am shown by people, even people who don’t know me well. That has never been more obvious than yesterday, when I needed all the help and got it.
These kindnesses include things like: my cousin’s sweet friend doing my make up when I was running short on time from screwing around with my PICC line; the groomsmen helping me in and out of the limo; everyone making sure I never had anything heavy to carry; everyone asking “Can I help you with anything?” pretty much anytime they saw me; the groomsman who escorted me down the aisle being careful with my PICC line; my best friend telling me during dinner that he was ready to take me home as soon as I wanted to go; people getting me drinks so I didn’t have to stand up unnecessarily; the bride running over to me because she heard I wasn’t feeling well and might go home; and lots of other very small things that mean so much to me.
This week has been a disaster on several fronts. But yesterday was an unqualified success, and it was only possible because of the help of many people. People say to me sometimes that they wish they could do more to help me, and I appreciate that. But these little things – the carrying of my meds or patience in giving me five extra minutes to get ready – these are just as important. I am blessed to have people in my life who do these things for me. I am also blessed to discover over and over again that most people are generally decent and willing to help. And when I’m around people like that, it becomes a little bit easier to have mast cell disease and I feel a little less like a burden.
Congrats, Matt and Jacqui! Thanks for the memories, it was amazing.