Anyway, I've been pondering about how I should word this post. I have a lot to say on the matter, so it might just exit my brain as a stream of consciousness. As an English teacher, I should feel more compelled to organize my thoughts, but I'll call it a free write and feel better about the haphazardness that will soon ensue.
If you've been following my blog for any length of time, you probably already know that it's a miracle Darwin's theory hasn't snuffed out my existence. I'm allergic to a whole host of things (including cocoa...yes, that means chocolate, ladies.) I think my body is confused. I look 21 (or younger...depending on whom you ask), I'm actually 28, and my insides are geriatric. I guess I'm okay with this odd situation because it's character building, right? Right.
At this point in my life, I've accrued a team of doctors. I have a gastroenterologist, an allergist, a rheumatologist, more than one dermatologist, a primary care physician (ya know, the normal doctor), a nutritionist, and the list continues to grow. I think I missed my calling in the medical profession. In 2007, I visited my primary care doctor, and he ran a bunch of bloodwork. Typical day at the doctor for Danielle. The results indicated that I tested positive for several markers of a rheumatic disease called Sjogrens Syndrome. He relayed the results but left it at that.
Fast forward to December of 2012. I returned to the doctor with these same nagging symptoms (such as ridiculous dry mouth that induced wicked stomach aches, eyes so dry that I wanted to scoop them out with a melon baller, and a chest so tight that I was sure a heavy, yet invisible elephant was standing on my lungs.) The good ol' doc didn't know what to do with me, but he knew I never came in unless something really was wrong. He sent me packing with some more bloodwork paperwork and chest x-ray forms. Everything came back pretty clear, so my doctor called me after hours one night. He said that he decided to scour my years of paperwork for answers and came upon those positive blood tests from 2007. He determined that it was time for me to see a rheumatologist to confirm or refute a diagnosis.
In the mean time, I visited my gastroenterologist who performed another endoscopy (a worse case of acid reflux could be to blame for the chest pain) and a colonoscopy. An endoscopy is really no big deal. A colonoscopy, however, is the pits. My doctor prescribed the worst "make ya poo" drug on the planet. That stuff tasted like regurgitation and made me want to regurgitate. Horrific. Both of these tests came back relatively clear, so the baton passed to the rheumatologist. (Side note: my gastroenterologist is the bomb dot com. He gave his business card to me and said to hand it to the rheumatologist who then needed to keep him in the loop. He said, "if he doesn't find anything, I want to help you. We'll get to the bottom of this." What a great doctor.)
The rheumatologist asked a battery of questions and ran more bloodwork. And, of course, I had to pee in another cup. I really need to refine that skill or bring a funnel with me to the doctor. Boys sure are lucky. The doctor then explained that the "golden test" for this syndrome involved a lip biopsy. I'll just tell you now that I was wholly unprepared for that visit. I thought biopsy meant scrape scrape, and we're done. I did not know it meant slice slice, stitch stitch, HOLY MOTHER OF CRAP THAT HURTS. Don't even get me started on the stitches removal.
Last week, the doctor confirmed the diagnosis: I have Sjogrens Syndrome. What does this diagnosis mean? Well, I'm not entirely sure, but here's what I do know:
- It's better to have an answer (even a not-so-wonderful one) than to be left feeling crazy, as if the symptoms are "all in my head."
- I'll live with it for the rest of my life, but I've lived with it this long. I can overcome it.
- There are means of managing it (which I have not yet mastered, obviously.)
- I'm attending my first support group meeting this weekend (my husband and parents in tow) where I hope to learn a lot from people who know much more about this condition than I do.
- I have the most supportive family, friends, and colleagues. My dad has spent hours (okay DAYS) researching Sjogrens. He wants to have a family meeting to discuss everything. My mom has crocheted me yet another scarf, and she got all of my groceries for me yesterday when my back hurt so badly that crawling to my car on the cold asphalt seemed like a viable option. My husband has been fixing up the most delicious meals and generally just being so understanding and loving. I'm beyond blown away by his kindness. He really took that "in sickness and in health" thing seriously. My in laws so willingly fix meals that I can eat and warm my heart with their support. Long story short? The people I love bless me every day with their kindness, generosity, compassion, and love.
- I might be unlucky in health, but I am lucky in love.
If you've made it this far, I'm going to reward you with some pictures. It's the cyber version of a gold star ;)
Meet Eliot, my elephant friend who humidifies my room. I'm hoping that Eliot helps the nosebleeds stop. Thanks in advance, El. By the way, your name is the same as a character from SVU (who's no longer on...WAH!), so you must be awesome.
I paired my button up from Target's boys' department with a navy sweater. Not rocket science, but it's warm.
I had no idea what to do with this pretty sweater because the neckline was too low. I decided that yellow and teal complement one another, so this pairing works. No?
I feel like Easter in this ensemble, and I rather like it.
If only I had a warm beach to travel to in this outfit. I think you'll be seeing this one again in the spring :)
In case I'm too lazy to shave my legs, I have this shirt paired with pants, too.
These are the things I have to think about, folks.
Last, but certainly not least, is one of my new door handles. You see, the previous owners thought it'd be great to put silver knobs on one side of doors and gold knobs on the other side. How does that even happen?! Anyway, the basement door (not pictured) was impossible to open. It heard several expletives fly from my mouth because I fought with it every day. The knob refused to turn. In other words, it refused to do its only job. As a result, my husband pitied me and replaced several knobs today.
He sure is a keeper, but I'm glad those doorknobs weren't!
I hope that finding a diagnosis helps to find you answers. I feel like I go to a lot of doctors too but you definitely have me beat. Your family sounds awesome and you're lucky you have such an amazing hubby. Wishing the best for you in figuring out Sjorgens syndrome.
ReplyDeleteMy golly, girl. What a draining process for getting to the diagnosis. I'm so glad you're getting so much love and support while you're getting all the pieces a little better figured out to beging managing symptoms and thriving once again! (I also love that your humidifier is Eliot, kind of Elliott from Pete's Dragon!)
ReplyDeleteOh my goodness, that's a lot of stuff for you to go through, and I'm sorry about the diagnosis, but at least there's a name and you finally know what it is, instead of the feeling of NOT KNOWING, which is the worst! Good luck with the support group!
ReplyDeleteI love all your outfits, and I totally have the same purple skirt, and I'm in love with the color of your pants in the last photo. I've been searching for a pair of jeans in that color but have been so far unsuccessful :(
Thank you for your kind words :) Also, those pants are currently at Kohls! They're the brand Elle. They also have a pretty lilac color, but I exercised self control and stuck with one color, haha.
DeleteSounds like you have an amazing support network in place :) I send my well wishes & I hope that you are able to positively manage the associated symptoms. At least you have an answer...it must have been hard waiting :(
ReplyDeleteInterestingly (or maybe not-so-interestingly...) one of my co-workers is going through testing for Sjorgens (two weeks ago was the first time I heard of the syndrome). I don't believe he had a lip biopsy yet...which does not sound pleasant! Ouch!
Wow, I'm so sorry to hear of how much pain it sounds like this condition has given you :( but I'm sure it's nice to finally know! Sounds like you have an amazing support system <3 that's awesome!
ReplyDeleteAnd you look darn adorable! Love your outfits!
xoxo- Kaara