Monday, July 6, 2015

getting to the bottom of things

After a week full of family, sun, sand, and fun, we're back home and sinking into the slow good days of summer...before we head back out on Sunday for our second week of vacation at the river. July is a busy busy month for us but fortunately it's full of the best kinds of adventures that we look forward to all during the school year. I'm just trying to enjoy every minute and hope that it doesn't pass by us too quickly although I know it definitely will. Can you believe it's already July?! Will said to me on July 1st, "Hey, the summer is 1/3 of the way over." 

........Well......Thanks for that friendly reminder, husband.


Before I get into my post for today I want to let you know that I'm not writing this for your sympathy or to make you feel bad or whatever. I'm just writing about it because it's finally getting figured out and it's been an overwhelming part of my life for the last four months and on some level for about four years now. And that's what I do here. I write about life. So here's what's been going on with me recently...intermixed with fun beach photos cause that's how I want to roll today. Cool with you? Great, let's go.

It's kind of a long story, but here are the important details. Ever since Annabel was born in August of 2011, I've had chronic abdominal pain. After many visits to my family physician, I ended up seeing a GI specialist back in December of 2014 and after some tests, he diagnosed me with celiac disease through a letter that he sent to my house, and I never saw him again. The totally gluten-free diet made me feel better for about two weeks before I went back to feeling sick after and in between meals and having general discomfort a lot of the time. I figured it was just my body adjusting to the new diet and probably my fault for not being as careful as I should have been with reading labels. 

Skip ahead to March of 2015. At that point I had lost about 18 pounds without trying to (I know that totally makes me sound like a jerk, but it's true and not good) and started feeling much worse. I was really dizzy, nauseous a lot of the day and not able to eat much of anything. I went back to my family physician who did blood work and told me I was anemic. He didn't seem worried about it, said it's pretty common, and told me to take an iron supplement. The added iron slowly brought my levels back up so I wasn't so dizzy anymore but then in May, I started having constant stomach pain, pretty much 24/7 (as compared to the ~18/7 that I was normally having). I woke up with it in the morning, felt terrible all day, and went to bed with it at night, only to be woken up with it almost nightly at 1:30am. I suffered through for about two weeks before throwing in the towel and making another appointment with my family physician. This time I was firm and said to him, "Listen. I felt normal for 29 years of my life and for the past almost-four have felt terrible. I need you to fix me. Now." 

He told me he though it was malabsorption probably caused by the celiac, referred to me as "failure to thrive" (which hurt a little but I'll forgive him cause he's a really great guy and doctor...and for the record, I have two family members who hadn't seen me in awhile, took one look at me and told me I looked sick, so he was probably right and so were they. Special thanks to those three for getting my attention and lighting a fire under me to finally get some answers) and quickly referred me to a new specialist. I was able to get in a week later after a million phone calls and messages and phone tag and sitting on hold. I was pissed and sick and exhausted and the last thing I had time for was phone calls, but it's amazing how many it takes to get your point across. To get the quick turnaround appointment I got with the specialist, I had to tell the receptionist that my doctor suspected that I was malnourished and that my body was essentially eating itself to keep functioning. It's a little dramatic...but also, unfortunately, kinda true...and it worked like a charm. She called a manager who called the doctor who approved me as a new patient and got me an appointment. Sheesh.

My new GI Specialist immediately laid out a plan for diagnosis which included upper and lower GI tests, a bone density scan, blood work, a new celiac panel, and a meeting with a dietician. A week later I went in for the GI tests and, in a sleepy post-anesthesia stupor, heard my doctor tell my husband that it was either Crohn's Disease, pre-cancer, or cancer. Luckily I could barely keep my eyes open so these words didn't immediately alarm me at that moment but filled me with dread for the week and a half following the tests as I waited for the biopsy results. 

 So that's how I came to find out that I have Crohn's Disease. I am very fortunate in that they caught it fairly early (though four years seems like a long time to me) and I didn't have any of the more severe symptoms that others I know with this disease have had. Treatment includes a couple medications, more blood work and scans, follow-up appointments, and an unfortunate amount of GI tests in my future. But oh my. How thankful I am to finally know what's wrong with me and that it isn't something much worse. This is something I'll live with forever, but it can be managed. And for that, I'm grateful. So very grateful. 

 It's been a long and painful road for me and unfortunately, sometimes I feel like I've sort of floated through these recent years of my life. But with the medications I'm taking, over the last week I've felt better than I have in the last four years. It's not perfect yet, and some days are worse than others, but as I'm starting to feel better, I'm excited and ready to make up for lost time. As Tommy would say, "Let's do this."

There's a whole other component to this story that I've left out at this point - the stress factor - that we had a whole lot of during those years that I was feeling terrible. But that's another long story that I've been thinking of writing about here at some point if I can muster up the courage. But something that's been coming back to me again and again recently are these words: "Tell your story." You never know who might be encouraged or helped or who could help you through being honest and transparent about life. I've been getting to know some new friends this year and really connecting more with a couple old friends and have been so blessed by their honesty, and in response, my own. It's refreshing to not always have to put on a happy face. After all, sadness can bring joy through love. (I know this especially now that I just saw "Inside Out" with the kids the other day. Loved it, but it's kinda sad!) So this whole long-winded paragraph to say that this is Part 1 of my story and Part 2 may be forthcoming. We'll see.

So there it is. Getting to the bottom of things and moving on. I knew I had a good feeling about 2015. Getting healthy, getting certified, getting honest. Good stuff.

Thanks for visiting us here today and reading this part of my story. Hope you've got something fun planned for this July week...or, like us, nothing at all planned, which is really just as great, isn't it? 

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