Wednesday, September 30, 2015

30 Things About My Invisible Illness

It's Invisible Illness Awareness Week!


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!

Thursday, September 10, 2015

Sometimes You Just Have to Laugh

You know that feeling when everything is just such a mess, you have nothing left to do but laugh because life is just that crazy??

Yep, we've definitely reached that point! Let me share one moment of frustration-induced-laughter that we had this past weekend.

I'll start by saying that Nick and I are currently debating whether our ER count should return to 0 or not...please chime in with your opinions!!

Anyway, after a rough week last week, I finally woke up Sunday morning feeling halfway decent. It was a really nice break. I made it in to church and met Nick after he finished serving in the Grid (our children's ministry) during first service.

I still felt pretty good after service ended, but the walk from the Big Room to the back door wore me out. I was pretty out of breath and kinda dizzy, so I paused right outside the door to try to catch my breath. Nick offered me a piggy back ride to our cars (in the far corner of the parking lot) and I gladly accepted!

When we reached the cars, Nick started to put me down, and that's where things got interesting. I felt Herman (my feeding tube) start to snag on something as Nick was lowering me to the ground. I let go of Nick's shoulders so I could make sure Herman wasn't caught, and in that brief moment started to fall backwards off Nick...

Nick felt me falling and did what anyone would do, tried to hold me tighter to prevent the fall...except I had already let go of his I kept falling backwards...until the asphalt parking lot tried to cushion my fall...

I instinctively put out my arm to catch my fall, and it worked! I smashed my left elbow and forearm into the pavement instead of my head...small blessings, right?? =P

My body being the way it is, often overreacts to unexpected stimuli, so in this case, instead of just having major pain in my arm, my entire body started shaking uncontrollably and I became extremely short of breath and dizzy. Pain can be a very potent mast cell stimulus, and that's what I was experiencing right then.

We were able to get my body slightly calmed down so we were able to assess the arm situation and decide what to do. Initially I just wanted to go home and wait it out and see how things were in the morning. Despite the amount of time we seem to spend in the ER, it is NOT one of my favorite places to be, so I wanted to avoid yet another "date."

However, once we got in the car, we decided to just get it checked out. My pain was radiating throughout my arm and I was having trouble moving my fingers, wrist, and elbow. Hey, there are SOME perks to having met my deductible back in February!

The laughter moment came in the car as we were driving to the ER. I was half crying in frustration, half laughing because SERIOUSLY?!?! We can't catch a break!! (Or did I?? Haha, pun intended! Keep reading to find out...) With everything we have going on, did this HAVE to happen?? I just started to feel better again, was having a halfway decent day, was able to get out of the house, go to church, etc. And then we were on our way to the ER just like old times...REALLY?!?!

But that's life! Things happen, there are days that just can't be put into words, sometimes there is nothing to do but laugh. And that's what we did!

Life is hard right now. We've had more than our share of tears and frustration and fear and pain and helpless moments. But at the same time, we have experienced God's grace in more ways than ever, we've learned to trust Him when we can't do anything else, we have grown closer as a couple through these rough moments, we've laughed at absolutely nothing, and we've watched a good many Indians games from the ER!

We all experience rough days, weeks, months, years, whatever it may be. And yes they are hard, but instead of just praying for it to end, we're praying to enjoy the moments. Life doesn't have to be bad just because it's hard. In the midst of this season of our lives, we've had fun, smiled, and laughed. Maybe it's not the same as if nothing was going on, but I can tell you that we certainly enjoy the good moments more because we do have hard times. So don't just wait for the rough seasons to pass, embrace that time as life given from God just as much as the good times. Find moments to smile and laugh no matter what your going through. God sees you and loves you, and that's reason enough to smile (even if it's through tears) any day!!

So, participation time, here's the ultimate question...

Do we have to reset our ER counter??

On the one hand, it wasn't an MCAS issue, so maybe it doesn't count?? It was just a routine "normal" person issue, not something related to me, so my thought is that we can keep going with our current 2+ weeks.

BUT on the other hand, we did have to make a trip to the ER. Our counter doesn't represent days I'm symptomatic (good thing, too, cause that counter wouldn't make it very far =P), but when we end up in the ER. Based on that, we did end up in the maybe we do need to reset.

Chime in with your thoughts on whether or not the Bokatopia ER counter needs to be reset!

UPDATE: Today is now Thursday, and I am happy to report that my arm is well on its way to healing. X-rays showed no breaks (yay!!) and it has been improving every day.

Wednesday, September 2, 2015

Joy and Contentment

"You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful."
James 5:11b

I read this verse recently, and it got me thinking. Of all the stories in the Bible and all the people who believed in God, why would James choose Job as the example of "the purpose of the Lord" and how God is "compassionate and merciful?"

For anyone not familiar with the story of Job, it is a story of suffering and pain. Job was a man who loved God, and because of that, Satan challenged that if Job had nothing, he would curse God. Job lost his family, his wealth, his health, EVERYTHING, yet he did not curse God. Instead he defended God to his friends and wife who told him to turn his back on God.

Good for Job not cursing God, but somehow losing everything just doesn't seem like compassion and mercy...

Yet THIS is the story James chose.

Lately God has been teaching me joy and contentment. I've always been taught that joy is not dependent on our circumstances, but never really been in a position to truly experience it. It's one thing to have been taught and gained head knowledge about something and another completely to have personal experience and truly BELIEVE it.

This season of life has been one of the toughest I have experienced. I've been discouraged, frustrated, scared, anxious, and helpless. I've prayed without answers and felt completely alone. Yet the past few weeks have also shown me what true joy can be like.

Joy is seeing the positive in each day no matter how difficult. Joy is finding time to smile in the midst of pain knowing that it, just like the good, is only temporary. Joy is being grateful for the time Nick and I have together even if it's spent on the cough or on the road to the ER. Joy is making time to laugh and be thankful for each day that we are granted. Joy is seeing the Son break through the clouds of life and even if the rain doesn't stop gives us a glimpse of hope.

Contentment is similar. It comes in knowing that regardless of what is going on in our lives, God is in control. It is in remembering that we were not created for this world, but for eternal life. We can find contentment no matter our circumstances when we are reminded that regardless of the trials of this life, God has promised us healing and life.

That's what Job understood. In the midst of his suffering, Job probably wasn't thinking that God is merciful and compassionate, but He did trust in the fact that God is in control regardless of what seems to be going on around us. God's compassion and mercy was shown to Job when he did not allow Satan to kill Job, but instead proved Job faithful then blessed him even more abundantly than before. In some ways, God is compassionate and merciful to us when He allows us to experience incredible heartache and pain. Because without troubles, we can become reliant on our own abilities and strengths. By giving us challenges we cannot endure without His help, God reminds us that we are desperately in need of Him.

Finding joy and contentment doesn't mean that I am happy all the time or never have moments when I am upset or scared or in pain or feeling the effects of living in a fallen world. It just means that I know that my life is not just about me and that God is in control. It means that I am learning to place my hope in things that will never fade and not rely on what I am capable of on my own. Plus, finding a reason to smile and laugh every day is just a good way to live anyway!