Depending on how well you know me and my life, you may not know that I struggle with a Chronic Disease. Last December I was (finally) diagnosed with Crohn’s disease.
I won’t go into a lot of detail, but Crohn’s disease is a form of inflammatory bowel disease, and it is a lifelong illness. There is no cure, and there are only a handful of meds approved to manage it. (for more info on Crohn’s disease, check out http://www.ccfa.org)
I’m currently in the process, along with my doctor, of getting my current “flare” under control. It’s not going too well. The meds I’m currently on cost about $5k a month full price. Luckily I’m WELL past my deductible so I’m only paying about $40 a month right now. Come January though…
Chronic illness is expensive. I don’t just mean in monetary terms either. It costs me a lot of time and energy. Going to appointments, getting up in the morning, finding the strength to jab a syringe into my stomach every week…. It’s not something I ever thought I would be living with. But here I am.
I’m telling you all this, because some days, I don’t have a lot of spoons. Some days I wake up, and the act of going to work to be the bread-winner, of driving home to help with dinner, of being anywhere but asleep, is all I have the energy for. People who live with chronic illness often call these units of available energy, “spoons.” This is based off of an article written called “The Spoon Theory,” by Christine Miserandino (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)
I might sometimes mention on here that I’m low on spoons, and this is where that term comes from. Currently, I’m full up on spoons. The new meds I’m on to induce remission are steroids. While steroids have a whole host of side effects that really just, suck ass… they do tend to make a lot of the issues you are having magically disappear. For the first time in a year, I’m feeling energetic. My joints don’t ache, and my muscles don’t cramp all the time. Of course I’m also a bit of a crazy emotional time bomb… but that’s my husband’s problem right now. Poor guy.
I hope you’ll check out these links, and get a little more informed about IBD, and other issues that disabled and chronically ill people face. This has been a huge eye opener for me, and I hope it will be one for you too.
Happy Friday, and thanks for letting me ramble.