yesterday i began (continued) on something i’ve been working on since last july. my “30 Before 30”. a bucket list, some might call it. none of the 30 were posed to be grand, totally unachievable, or just about me. in fact, more than 15 involve community organizations & even some national ones. whether it be through volunteering, sharing my gifts with others or just being there for someone in a way i haven’t reached out as an advocate or an activist.
i ran my last race in november 2015. it’s not easy to watch your dreams come & go, do to financial situations, personal health issues or finding the balance of completing proper training, taking care of your physical & mental health and you social health. yesterdays walk became a “woggle” as i like to call it. racewalking failure, for sure, but its definitely not a walk & also not a trot. its just – a woggle. not many of my 30 contain a goal for myself, but there are some that I’m working on to just be a better person – a friend, a sister, an aunt, a daughter, a favorite niece & ultimately, someone else’s other half. (no, thats not on the list!!) one goal id like to share with you is accomplishing a mini tri.
unless you’ve lived under a rock or haven’t seen the posts – I’ve been quite a medical mystery since about 2 years ago, since i began to notice heightened symptoms. but this isn’t about what could/will be. all i wish to be able is an endurance event.
life as a chronically ill person, tests & organs throw wrenches into your plan. if you’re lucky, you can dodge that wrench, or pick up your bike after you’ve fallen. “fall down 7 times, stand up 8”, right? i talk to God a lot lately. it’s not always positive, but i make sure He’s aware of what may be to come & ask him to please be gentle, whenever the time comes for the “next time”. i’m going to be fundraising, with my goal of $7,000 before my sprint trip. to you, you may look at this and say “$7,000? again? what is she doing now?” i get it.
but in order to explain my reasoning, is pretty easy….. $7,000 is approximately the cost for ONE injection i was previously on. my monthly infusions have now risen to $27,000. if you’re lucky, some is covered or paid by an assistance program. but its not that easy. hospitals & insurance decide when & what order they want to process your appts. my maintenance meds include a monthly infusion, several oral tablets, weekly injections & many PRN meds. and how can i forget two different forms of steroids that have rabid side effects. i wonder & have a ton of anxiety that i will have an adverse reaction to the antibodies given in my infusion. this has happened & anyone who has been there knows how scary it can be. after getting my meds from the pharmacy, i have to get the other meds my body needs. Out of pocket costs can range from $30-$75.
today I’m telling you 1 of 30 goals. this one should be pretty unsurprising. because ironically, 3 days after my 17th birthday, i was diagnosed with Crohn’s Disease. will you help me on my journey?