Wednesday, September 30, 2015

30 Things About My Invisible Illness

It's Invisible Illness Awareness Week!

Yay...

Somehow it's hard to get excited about something I never wanted to celebrate in the first place. But my reality is that, right now, this is my life. And if I'm not willing to speak up on behalf of the mast cell community, who will?

The benefit of an invisible illness is that no one has to know that anything is wrong. The downside of an invisible illness is that no one knows that anything is wrong unless you tell them. There's no research without funding, and no funding without awareness. So since I'm not independently wealthy, this is my effort to raise awareness for mast cell disease and the invisible illness community.

Every year, this "30 Things About My Chronic Illness" meme circulates in the chronic illness community to help raise awareness for the invisible and not-so-invisible conditions that we deal with every day. Since it's Invisible Illness Awareness Week, here's my "30 Things" to share with you!

1. The illness that I live with is Mast Cell Disease. (And gastroparesis and POTS, but since we think these are the result of my MCAS, I'll leave it with that.)
2. I was diagnosed with it in the year 2015. (January 22, 2015 to be exact)
3. But I had symptoms since I was 17 years old, so 2007.
4. The biggest adjustment I've had to make is adjusting to my "new normal" and not being able to do what I used to be able to do.
5. Most people assume that when I look good, I feel good.
6. The hardest part about mornings are the time before I take my meds and exercise. I am very symptomatic in the mornings and it can be a struggle to get going, even though I love to watch the sunrise!
7. My favorite medical TV show is House! I just wish all doctors that dealt with patients who have unusual medication conditions were as determined as he is to find answers...
8. A gadget I couldn't live without is my cell phone. While at times the constant connectedness of our society is annoying, I am very grateful to be able to call Nick or family (or 911) at a moment's notice and from anywhere if I need to.
9. The hardest part about nights is SLEEPING! Pain and nausea aren't so kind for good night's rest...and who knew you could be dizzy while lying down with your eyes closed?!?!
10. Each day I take _____ pills and vitamins. It depends on the day and my symptoms, plus half my meds aren't even in pill form anyway!
11. Regarding alternative treatments I am willing to try anything that makes sense and doesn't have the risk of serious side effects.
12. If I had to choose between an invisible illness or visible, I would choose invisible. I like having the option to be able to hide it if I want to, although Herman has kind of changed that, but still. =)
13. Regarding working and career: I'm doing it! Kind of...I'm still continuing to work on my PhD and will hopefully graduate sometime in the next year (or so). I'm also working a part-time job to help fund my doctor's retirement account...
14. People would be surprised to know that I'm not sorry that I'm sick. I have days that I struggle, I cry in pain and fear, I am scared of what the future may bring, I miss running and being able to do what I used to be able to do, I hate that my family has to deal with this too, but along with all that, I also believe 100% that God is good and that he can use me regardless of my circumstances and that one day I WILL be healed.
15. The hardest thing to accept about my new reality has been that my health impacts my family just as much or more than it does me.
16. Something I never thought I could do with my illness that I did was to be open about what is going on and not try to hide everything.
17. The commercials about my illness do not exist...
18. Something I really miss doing since I was diagnosed is RUNNING!!! (not really since the diagnosis but since my symptoms have been progressing)
19. It was really hard to have to give up feeling like I was in control of my health and life.
20. A new hobby I have taken up since my diagnosis is painting! (Okay, full disclosure, paint-by-number...but for my non-artistic family, that's a huge step!)
21. If I could have one day of feeling normal again I would go running, find a cool place to go hiking with Nick and Bonk, eat lots of fruits, vegetables, and tortilla chips, walk all around a really cool zoo, and stay up late to stargaze!
22. My illness has taught me that I don't have to fit any sort of stereotype of what I "should" be, I just have to be confident in who I am in Christ.
23. Want to know a secret? One thing that people say that gets under my skin is "God never gives us more than we can handle." FALSE! If you haven't read my blog post about how I really feel about this statement, check it out here.
24. But I love it when people send me texts at random times with encouragement or funny photos of alpacas or platypuses (platypi?) or hedgehogs or armadillos or any other cute animals that can be thought of! (If you need my phone number, let me know =P)
25. My favorite motto, scripture, quote, etc. 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 walk and not grow weary; they will walk and not faint." AND "On my roughest days when I feel like I want to give up, I just remind myself that my track record for getting through bad time is 100%."
26. When someone is diagnosed, I'd like to tell them that there is life after or during a chronic illness diagnosis. Smiling and laughter and JOY are not dependent on your circumstances and neither is God's love, purpose, or trustworthiness.
27. Something that has surprised me about living with an illness is that life is not always about being strong enough but sometimes about knowing what strength through weakness looks like.
28. The nicest thing someone did for me when I wasn't feeling well was MARRY ME! Shout out to Nick! But seriously, Nick is so far beyond anything I could have ever hoped for in a husband, and I am thankful every day for him and the sacrifices he makes for me. He knew what he was getting into, but life has still become so much more than either of us could have imagined. He takes everything in stride, and nothing can make me smile faster or laugh quicker than spending time with him!
29. I'm involved with Invisible Illness Week because like I've said before, (and at the top of this blog) there's no research without funding and no funding without awareness, so I'm doing what I can to raise awareness for mast cell and other rare diseases.
30. The fact that you read this list makes me feel thankful! I know that this may just be another blog on your list or another facebook link that you clicked, but thank you for that. I can't raise awareness without an audience, so my future and the future of everyone with mast cell and rare diseases is dependent on those of you who listen to us and come alongside us. So thank you for reading this post, but please, go one step further and SHARE! On facebook, with friends and family, or with someone you know who may be going through something similar. I'm not alone in this struggle, so please help me raise awareness for everyone dealing with an invisible illness!

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