Struggling with an “Invisible Illness”| Personal

I’ve been putting this off for awhile, but the blog has been suffering dearly lately, and I feel I owe you all an explanation.

This isn’t something I like to talk about, because frankly, who wants to tell people about the personal things that go on within their bodies? Feel free to skip over reading this if you so choose, but know I’ll spare you the nitty gritty details. However, one big goal with this business has always been to have my clients be more than just clients- they’re also my friends. And friends share things- the good, the bad, and the ugly. So I’m going to share my story with you, and who knows, maybe someone else out there is struggling with this too.

Let’s rewind about 5 years ago, back to when I started college at VCU. A few weeks before I moved into my dorm, I started frequently having to use the bathroom out of nowhere. I thought I was just coming down with some kind of stomach flu- but it never went away. Week after week I kept having problems. I finally went to see my doctor (actually my pediatrician since I had just turned 18), who knew something was up and referred me to a gastroenterologist.

I went to see the GI, who ran some tests and decided I needed to have a colonoscopy. At 18 years old, that prospect did not thrill me, but I knew I had to find out what was going on with my body. One of the other side effects of my “issues” are severe stomach cramps. The doctor told me that if I experienced any especially bad ones before the procedure, I should go to the emergency room. This ended up happening, so off to the ER I went. I actually ended up losing the nanny position I had just started over that trip to the ER- but that’s a story for another time.

Over the next few months (which also happened to be my first semester at college) I had a few more colonoscopies, was in and out of the hospital, and finally ended up with a diagnosis- sort of. The doctor I was seeing told me he thought I had acute Ulcerative Colitis. He put me on some medication, told me to call the office in a few months, and sent me on my way.

What followed were some really rough weeks- there were many days I couldn’t get out of bed. When I could afford the medicine (it was really expensive for a college kid), it only barely made things better. When I couldn’t afford it, I was completely miserable all the time. I missed so many classes that first semester that I nearly failed 3 classes. I scraped by in one ended up having to retake two later.

The first GI I saw never gave me much information on my illness other than to take my medication (which was way to expensive), so I eventually took it upon myself to find another doctor. This one did another colonoscopy and told me it looks like I had UC, but he couldn’t be sure. He put me on a much cheaper alternative medication. While I could afford this one, it gave me really horrible migraines- which led to missing classes again. I started to only take the medication when I experienced flare-ups, and would stop taking it when my symptoms were in remission.

My sophomore and junior year at VCU, I took a few classes about nutrition and started to change the way I eat. I stopped eating processed junk food, and started eating natural, made from scratch, and organic foods. I think I’ve had fast food maybe three or four times in the last year- something that usually only happens on road trips. This made things a LOT better, but I’m still not, and probably never will be, cured.

I’m still in a learning process with this diagnosis. I get frustrated because I’ve still never really gotten a rock solid confirmation of what exactly I have. I’m still on a search for a doctor who specializes in UC, so until then it’s trial and error to find out what kind of foods makes me sicker.

When I’m in remission, I can eat almost anything. When I experience flare-ups, I can barely find any food that doesn’t make things worse. These are the times when I fall into this funk that I’m currently in. My food isn’t properly being digested, so my body isn’t absorbing the nutrients that I need. This leads me to headaches, lethargy, feeling sick to my stomach, and lots of other things that make me want to do absolutely nothing.

While I love my day job, it’s pretty stressful and leaves me exhausted at the end of the day- especially when I’m experiencing symptoms. So that’s why I haven’t been blogging lately. I am so tired and feel so awful when I get home that I truly don’t have the energy to type up a rockin’ post. That being said- I’m really going to make a sold effort to get these recent shoots up and shared with you guys in the next few days.

To the clients that have been ever so patient with me during this, thank you. You guys are the ones that drive me to keep chasing these dreams.

I would also really appreciate it if you guys would pray for me- that this flare-up would end soon so I can enjoy my wedding day to this super awesome guy without feeling sick ruining anything 🙂

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If you have any questions or want to know more about UC, feel free to email me! I definitely don’t know everything, but I’m happy to share what I do know!

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5 thoughts on “Struggling with an “Invisible Illness”| Personal

  1. Girl, you are SO brave for sharing all of this publicly! I also have lots going on with my body (diabetes) that I fear will interrupt my business or flare up during a wedding or other really important event. Just know that you are not alone! I pray that God gives your courage, and hopefully some answers soon!

  2. Hi Stacey, I’m so sorry to hear that you’re having a flare up. I’ve only had UC since May 2007 & officially diagnosed since Aug 15th 2007. It was a long struggle to figure out what was going on with my body & what I could to help it before, during and after. I would be happy share tips that have worked for me or just to listen if needed. You’re not alone. I hope your flare doesn’t interfere with your big day.
    Becky

  3. As one with an “invisible illness” and other ailments, I can definitely say it’s awesome for you to share. I can sympathize how frustrating it can be at the not knowing and when things flair up, the question is “what the H made this come on?!?” One thought… have you been tested for celiac or gluten intolerance? A lot of what your saying makes me think gluten. The intolerance could be when you’ve had too much. I can have just a little and be fairly okay… all depends on what kind and how much… it’s a dangerous boat to rock though. The other idea I would say to investigate might be a rheumatologist. Stomach issues can indicate a rheumatology issue too (something I didn’t know until recently). Sending prayers the flair clears up so you can enjoy your special day, and also for answers!

  4. Pingback: 2013 | A Year in Review | Stacey Dinch Photography

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