Tuesday, September 9, 2014

Invisible Illness Awareness Week: 30 Things

So it's invisible illness awareness week...I don't typically do a whole lot for these awareness weeks/events/promotions mostly because I don't always feel like I know what to do/say. Plus, I'm still struggling with actually being a part of the chronic illness community. It's one thing to know I don't feel well and be trying to figure out what is going on and another thing completely to actually admit "I HAVE A CHRONIC ILLNESS." And I think that is the part that is hard for me. Nevermind that it's been 7+ years of dealing with SOMETHING, I still feel weird admitting that despite how I look, things are NOT okay (hence INVISIBLE illness awareness...)

BUT, in spite of that, I figured that I would at least post something on this blog about Invisible Illness Awareness Week since I'm not really sure anyone reads this anyway (feel free to comment if you do =P). Here is my 30 Things post!

1) THE ILLNESS I LIVE WITH IS: If you can figure it out, let me know! Unfortunately I still feel like I'm in the diagnostic stage...despite having been diagnosed with multiple conditions (POTS, NCS, GP, etc.) we're not sure if any of those are complete/legit diagnoses...currently pursuing possible digestive motility issues and mast cell activation syndrome...will keep you posted!

2) I WAS DIAGNOSED WITH IT IN THE YEAR: see above...but started being diagnosed in 2010


4) THE BIGGEST ADJUSTMENT I'VE HAD TO MAKE IS: realizing that just because I used to be able to do something doesn't mean I still can. I used to be so crazy busy all the time, and I thrived on that! Now I find that I have to carefully plan out my schedule or I'll set myself up for a big crash.

5) MOST PEOPLE ASSUME: that nothing's wrong! I work really hard to keep people from knowing that I'm sick unless I choose to tell them.

6) THE HARDEST PART ABOUT MORNINGS ARE: knowing that they only last so long! Haha, I know most people struggle in the mornings, but I find that I do well at the beginning of the day and fade as the day goes on. Unless I'm having major stomach issues, then the hardest part about mornings is waking up still nauseas and in pain from the night before.


8) A GADGET I COULDN'T LIVE WITHOUT IS: my cell phone, as much as I hate to admit it, I do like being able to use it when I'm stuck on the couch or in the bathroom in pain or sick.

9) THE HARDEST PART ABOUT NIGHTS ARE: not being able to sleep because of pain or nausea and knowing I have to be up early the next day for teaching or research meetings.

10) EACH DAY I TAKE ____ PILLS & VITAMINS (NO COMMENTS, PLEASE) It changes depending on my symptoms and what we may be trying at the time...

11) REGARDING ALTERNATIVE TREATMENTS I: am willing to try things as long as there isn't
a huge risk and it makes sense...at this point I'm willing to try most things since not a whole lot of conventional medicine seems to be helping.

12) IF I HAD TO CHOOSE BETWEEN AN INVISIBLE ILLNESS OR VISIBLE I WOULD CHOOSE: probably still invisible, sometimes I get frustrated when I don't know how to approach a situation where I have to let someone known and am not sure what to say since I've always looked okay, but at least I get to decide who I tell.

13) REGARDING WORKING AND CAREER: I'm doing it! Currently working on my dissertation for a PhD in Exercise Physiology and applying to universities for professor positions.

14) PEOPLE WOULD BE SURPRISED TO KNOW: that I need my sleep. Everything else starts getting worse if I'm not able to get a good night's sleep on a regular basis. And I've been this way since I was little!

15) THE HARDEST THING TO ACCEPT ABOUT MY NEW REALITY HAS BEEN: that my medical issues do not effect only me, but that my family and close friends are also along for the journey. This is probably the hardest thing for me, knowing that the choices I make do not just effect me but those I love the most.

16) SOMETHING I NEVER THOUGHT I COULD DO WITH MY ILLNESS THAT I DID WAS: travel to Mexico on a mission trip with my church. It was an incredible experience, and I am so thankful that I was able to go!


18) SOMETHING I REALLY MISS DOING SINCE I WAS DIAGNOSED IS: being able to just go out to eat with friends and family and not have to worry about whether I can eat something at the restaurant or how they will handle my food allergies.

19) IT WAS REALLY HARD TO HAVE TO GIVE UP: being able to pack and go on road trips without having to coordinate food and schedules ahead of time so I can manage the trip.

20) A NEW HOBBY I HAVE TAKEN UP SINCE MY DIAGNOSIS IS: never really had a hobby...still don't...but I do enjoy puzzles.

21) IF I COULD HAVE ONE DAY OF FEELING NORMAL AGAIN I WOULD: not sure because I don't feel like I am unable to do things that I want to do. I usually have to adjust things or take into account how I'm feeling, but for the most part I feel like I am "normal-ish."

22) MY ILLNESS HAS TAUGHT ME: that everyone struggles with something, and you don't always know what is going on beneath the surface...most battles are fought privately.

23) WANT TO KNOW A SECRET? ONE THING PEOPLE SAY THAT GETS UNDER MY SKIN IS: "I wish I was skinny like you!" Oh really, you wish you had a stomach that rejects solid food and causes major pain and nausea after eating...want to trade??

24) BUT I LOVE IT WHEN PEOPLE: let me know they care and are praying for me but don't make a big deal out of me being sick. I'm still me! Sometimes what I want the most is just to be a part of whatever is going on even if all I can do is sit on the couch and watch.

25) MY FAVORITE MOTTO, SCRIPTURE, QUOTE THAT GETS ME THROUGH TOUGH TIMES IS: Isaiah 40:31 - Those who wait upon the Lord shall renew their strength; He will raise them on wings like eagles. They will run and not grow weary; they will walk and not faint.

26) WHEN SOMEONE IS DIAGNOSED I'D LIKE TO TELL THEM: There are good days and bad days. Try to remember the good ones and don't hold on to the bad ones. Don't let your fear of having a bad day keep you from trying things and doing what you enjoy. God is still good and loves you more than you can know.

27) SOMETHING THAT HAS SURPRISED ME ABOUT LIVING WITH AN ILLNESS IS: that it can be so much more draining than just physically. I find that there are days that I am not only physically exhausted but spiritually and emotionally and mentally tired, too.

28) THE NICEST THING SOMEONE DID FOR ME WHEN I WASN'T FEELING WELL WAS: giving me a stuffed (plush) stomach and intestine! Haha, not sure if it's the nicest thing EVER, but definitely something that made me smile. The ones inside me may not work well, but at least my stuffed ones are cute to look at.

29) I'M INVOLVED WITH INVISIBLE ILLNESS WEEK BECAUSE: if not me then who? If someone dealing with this stuff on a daily basis isn't willing to get the word out there, then it's not going to happen.

30) THE FACT THAT YOU READ THIS LIST MAKES ME FEEL: ??? no idea, if you're my mom (who I know will read this =P) then you probably already knew most of this...anyone new to my blog, welcome! Hope my posts aren't too jumbled or boring! Feel free to leave comments!

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