Saturday, October 1, 2016

Invisible Illness Awareness Week: 30 Things 2016 version

Every year for Invisible Illness Awareness Week, this "30 Things" blog theme comes around to raise awareness for some of these unseen conditions that can still make a huge impact on the lives of those of us that live with them every day. I've done this for 2 years now, and it's been kinda cool to see my medical journey unfold and how things have changed even just in the couple of years I've done this blog. So, to celebrate the final day of Invisible Illness Awareness Week, here is the 2016 version!

Photo is from our wedding, just over 2 years ago.
This was pre-diagnosis...what you don't see is
that I had been on a liquid diet for almost 2
months at this point. Three days later, Nick and
I would make our first ER trip as a couple. THIS
is why we need Invisible Illness Awareness Week.
1. The illness that I live with is Mast Cell Activation Syndrome (MCAS) which is a form of mast cell disease. I also deal with various other chronic illnesses as a result of this mast cell disease, such as POTS, gastroparesis, pancreatic and adrenal insufficiency, etc.
2. I was diagnosed with it in the year 2015. January 22, 2015 to be exact.
3. But I had symptoms since I was a senior in high school, about 2007-ish.
4. The biggest adjustment I've had to make is that I can't live at warp speed anymore. 
5. Most people assume that because I look good, I must feel good.
6. The hardest part about mornings are getting out of bed. I am typically very symptomatic in the morning before I exercise which gets the blood flowing and allows me to stay vertical for a bit longer.
7. My favorite medical TV show is House. While I'm not so sure I'd want his bedside manner, it would be nice to have a doctor so into the mystery of their patient that they won't give up until they get an answer.
8. A gadget I couldn't live without is cell phone for sure. When you're stuck in the bathroom or in bed for long periods of time, it's nice to have some form of distraction.
9. The hardest part about nights is sleeping...pain, GI issues, dizziness (yes, this can still happen lying in bed, sometimes even with my eyes closed), and more don't always make for a restful night.
10. Each day I take ______ pills and vitamins. More than I'd like, that's for sure! Also, half my medications are liquid so I don't even know how to answer this one. =P
11. Regarding alternative treatments, I am open to anything within reason. My body is *slightly* (okay REALLY) sensitive, so while I'm open to discussing non-medicine related treatment options, it's always cautiously and making sure I'm fully informed.
12. If I had to choose between an invisible illness or visible, I would choose invisible. If it's not obvious that anything is wrong, then I can pretend to be normal in certain situations if I want. Although Herman and Leni make that a bit challenging right now =P

Sometimes even with an invisible illness, things become
visible. ER visit #whoknowshowmany when we were visiting
my parents over Christmas when my blood sugars wouldn't
come up. This was less than 24 hours after doing an Escape 
Room with my family and having a fun day out.
13. Regarding working and career: Slowly but surely, one day, I WILL graduate with my PhD...some I slowly creep toward that degree, I'm also working from home as a travel agent with Trippin' with Jamie!
14. People would be surprised to know I pretty much lived on slurpees for almost 4 months. Okay, maybe not a surprise, but it's true!
15. The hardest thing to accept about my new reality has been that I'm not the same person I was 5 years ago, and that's okay!
16. Something I never thought I could do with my illness that I did was eat solid food and run again!
17. The commercials about my illness still don't exist. Although I did recently see a commercial for one of the medications I take, so maybe that counts for something...although it wasn't advertised for the reason I take it...
18. Something I really miss doing since I was diagnosed is traveling spontaneously without having all sorts of medical supplies, TONS of planning, and having to know where the closest hospitals are.
19. It was really hard to have to give up my GA position at school.
20. A new hobby I have taken up since my diagnosis is being a travel agent! Does that count? Maybe not a hobby per se, but I'm working for Trippin' with Jamie to help people plan vacations!
21. If I could have one day of feeling normal again I would BE SPONTANEOUS!! I'd do whatever we felt like doing that day with no planning needed.
22. My illness has taught me that faith to believe that God can and will heal me while also trusting that He is still good even if He doesn't heal me is an incredible place of surrender and freedom. 
23. Want to know a secret? One thing that people say that gets under my skin is "You look so good!" I get it, people are just trying to be nice. But often I don't feel well and am just trying to get out of the house. 
Waking up after a procedure where my body tried
to go for a full blown mast cell reaction....
thankfully some benadryl and breathing treatments
(and a snuggly poodle) kept things from spiraling
out of control. This was less than 2 days after
spending a week in VA with my family.

24. But I love it when people send me random texts or facebook posts.
25. My favorite motto, scripture, quote, etc. that gets me through tough times is Daniel 3:16-18: Shadrach, Meshach, and Abednego answered and said to the king, "O Nebuchadnezzar, we have no need to answer you in this mannger. If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliever us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up."
26. When someone is diagnosed, I'd like to tell them you are still you. Yes, things have and will change. But don't lose sight of who you are because you'll always be you. 
27. Something that has surprised me about living with an illness is there aren't just blessings that we find, but also things that are truly good. I don't just have to be thankful in all cirucmstances, but there are things that I am truly thankful for.
28. The nicest thing someone did for me when I wasn't feeling well was do what all you guys do when you read this blog and keep me in your thoughts and prayers. THANK YOU! A thousand times over. Thank you for walking through this season of life with us.
29. I'm involved with Invisible Illness Week because if those of us living with these conditions aren't willing to speak up and raise awareness, how can we expect others to? And even more so, how can we expect or hope for more research or treatments if we're not willing to get the word out.
30. The fact that you read this list makes me feel thankful that you've been here for another year! I wish it didn't have to be this way, and maybe next year things will be even better. Only one way to know...stay tuned!

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