My wife (Mrs. Robinette) has a birthday in February. Every year on each other’s birthdays we do this thing where we agonize over what we’ll get each other. We pretty much have all the things we need. And to not send us into some territory of hoarder of all the things, sometimes we can get pretty creative. And by creative, I mean we tell each other, “Don’t get me anything.” And then we don’t listen, and we search and search for something totally awesome to recognize the special day.
This year, I got my wife tickets to The Haters Roast – The Shady Tour, a drag show with several of the drag queens from RuPaul’s Drag Race. OMG, do I ever love that show. In my past life, I think I was a drag queen. I’m sure of it.
March 31st was our day. We were going to travel from our tiny hometown up to Dallas for the show. The fierceness, the divas, the queens…I could not wait to take my wife out for a fabulous night.
Earlier during the week of the event, I knew I wouldn’t be able to do it. I knew the symptoms from my multiple chronic illnesses had left me in a place that I wouldn’t be able to make the trip. The 2 hour drive away from home wouldn’t be possible due to my pain, energy, and other symptoms.
Mrs. Robinette asked me if I thought I’d be able to make the trip. She said it didn’t matter — the money didn’t even matter. She just wanted me to be SURE. REAL sure. I kept insisting I’d be fine. I’d power through, I said. We need this time alone, I said. And then I had to tell her that I was wrong. I had to tell her that I couldn’t celebrate her birthday with her and that we couldn’t go. And my heart broke into a million tiny pieces. Because being sick sucks.
Oh yeah. That’s me. Jen. Jen the sick girl.
Since this is my first post on my new blog, I’ll get into the deets later. But, this is my introduction of myself to the world. The post where I say, “Hey. This is me. This is my reality. I’m a chronically ill woman. And sometimes reality bites.”
Over the past few years, I’ve been on a journey of figuring out my health. I’ve been on a search of diagnosis and discovery. And while I’m not through discovering, or even with the diagnosing, I’ve finally accumulated a few good doctors who’ve helped me begin the long process of diagnosing my multiple chronic illnesses.
I’ll explain what all my labels mean later, but for now, the list goes a bit like this…
I have: IBS-C (C is for constipation, but I wish it was for cookie), Gastritis, Hemorrhoids, Gastroparesis, Sucrose Intolerance, Vitamin D & B12 Deficiency, Neuropathy (in my hands and feet), Raynaud’s Disease, Ehlers-Danlos Syndrome (hypermobility type), POTS (postural orthostatic tachycardia syndrome), and suspected autoimmune disease (we just don’t know what yet).
That’s a lot, right? And I’m not done collecting diagnoses. And it’s taken a million years to get here.
I’m on a path of seeking treatment for all those words above. I’m on a path of finding the right doctors. I’m on a path of trying to learn my new reality of being a chronically ill woman. And I’m on a path of doing all of the previous while still being just Jen: the wife, the mother, the sister-in-law, the speech therapist, the home-cook, the friend, the daughter, the pet mom, and so on.
This is hard. This is really hard.
It’s hard to say no all of the time because you’re too sick. It’s hard to only have the energy to lay on the couch every weekend. It’s hard to be too tired to do fun life things. It’s hard to hurt all of the time. It’s hard to feel ill all of the time. And it’s hard to miss out on your wife’s birthday because you’re feeling too wretched to have fun.
That’s not taking into account the expense of being chronically ill or the time it takes to travel to the doctor all of the time. It’s not taking into account the emotional toll of being a sick person. And it’s not taking into account how others treat you when they know (or don’t know) you’re sick.
So, I started this blog. Because it’s time to stop hiding and to be honest about this journey. And I sorta need a place to write down all of the thoughts that are running through my head on the daily because sometimes this life is just too much to handle.
So, here we go. This is the beginning. And I hope you’ll read along with me about this crazy life of a chronically ill woman. And if one person out there reads along and relates and thinks, “Oh good. Someone out there understands.”…then I’ll be really happy. Because one of the most difficult things about all of this is feeling so alone amongst all of the illness and medical things.
But, I’m not alone. I have a fabulous family and support system. I am working towards building a team of great doctors. I have amazing friends. And now I have you…who gets to read my endless ramblings.
So, let’s do this thang.
Hi, I’m Jen. And I’m chronically ill.