Disjointed Mama

With Ehlers Danlos Syndrome everyday is a surprise as to what it will bring and how my body will handle it. Most people I know who suffer from a chronic illness or pain don't like to complain about their pain nor do we enthusiastically share our newest and medically unexplained ailment like we are in a competition for who is toughest for making it through the day. We are silent warriors, who know all too often that the price for what we accomplish today will come due tomorrow. When you suffer from a chronic illness and are also a parent, you have the added fun of trying to balance being the parent you want to be with the parent you are physically/emotionally capable of being at any given moment. And that is a tough thing to understand as an adult, let along for your kids who can struggle to understand why yesterday you could play catch and today you aren't up for it. There are everyday niceties that people exchange with their loved ones, their friends and colleagues that, fo

It's that time of year again and the children are screaming with delight that they have a whole week off of school. And then they hear the word they dread more than shots at the doctor: CAMP. That is right, they believe they are the only children on earth who are forced to endure camp during school vacation week. For five very long years I have had to hear: "we are the only kids in the whole school who don't go on vacation or who don't get to just hang out at home." "it's so unfair that you work. why do you have to be a working mommy?" "this camp is awful; we hate it;" "why? why mommy why? why can't you take the week off?  In case the endless whines and pleas weren't bad enough, I also have a hard time finding actual camps and when I do it has hours that are less than accommodating for a full-time, 40+ hours a week working mom.  So what's a parent to do? Here are some survival tips that help me get by. Researc

We've all been there, life gets away from us. Our pursuits and hopes fade like background noise as the hustle and bustle takes over. New medical challenges presented themselves and my family has struggled through the recovery of not one, but two tethered spinal cord syndrome surgeries in a five month span of time. As the dust settled I realized I'd lost my self. I'd been increasingly sad, frustrated, and feeling lonely. Getting ever further away from my ideal weight and not seemingly anywhere closer to answers for that or other health problems. So after a long break from writing, I'm back! Here's what I've learned since I last wrote: Children are resilient. If you stay positive and give them encouragement, even when things seem gloomy or terrifying, they will keep their head held high. You just have to remember to model it (even if you are dying on the inside). My son was so brave going in to the OR for his spinal surgery, cracking jokes to the surgical tea

To the diagnosis that changed my life but doesn’t define me: When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from my head to my toes. Your name,  Ehlers-Danlos syndrome  (EDS), didn’t scare me at first. It didn’t make me angry or sad. I had felt angry, sad and confused for years; what I felt was, for the first time in a long time, relief. Your name gave me back my sanity, my faith in myself and a path to follow. For years, doctors brushed off my suffering as either an exaggeration or delusion. No one could visibly see why my body was failing to stay together, and no tests were able to show why I reported such high and  chronic pain . So when the geneticist told me I had this heritable connective tissue disorder — that essentially the collagen that compromised all th

It's 6:15 p.m. and I've just walked in from a long day at work that was briefly interrupted for a physical therapy appointment to put my jaw back where it should be [read: TMJ EDS style is a hoot!].  The kids are running all over the place crazy - I think the sitter gave them speed, OK  not really but they are over the top today. I contemplate the pork chops I pulled out and calculate by the time I cook them and wait for my oven to warm up the kids and I should roughly be eating by their graduation from college (They are 6 and 4 years old). I opted for a good ole favorite in my house...Brinner! French toast here we come. So why is this worthy of noting? Well maybe because what started as a treat has quickly become my go to when I'm broken, tired, run down, had a long day...so what all that means is that brinner happens all too often in this EDS house. So I'm redefining life. Breakfast now happens at 6:00 p.m. And we shall have pork chops at 6:00 a.m. Except tha

When you realize that the small little move you made, one normal everyday people make all the time, has completely undone your day. You wince and quickly follow it up with a smile so that your loved ones will not give you that look of sorrow. Or is it pity. Or anger. Either way, you grin and bear it because you are young, healthy, and by all accounts that small little thing shouldn't send excruciating pain down your spine. It's in that moment you remember you have Ehlers Danlos Syndrome, or EDS. The S here is important, particularly if you are female because with out the S you have ED...yup, erectile dysfunction. My big brother told his doctor his little sister had ED. Would have loved to see that guys face, but hey it was 2013!  So for those unfamiliar with Ehlers Danlos Syndrome let me give you the highlights. If you suffer from a heritable or chronic condition, even if it isn't EDS, you will likely feel like you can relate. EDS is a heritable connective tissue d