Thursday, September 8, 2016

"Livin' on a Prayer" (actually MANY prayers)

Ever heard the Bon Jovi song Livin' on a Prayer? If you haven't, stop reading now. Go listen to it. And embrace the fact that you're even more sheltered than this homeschooler...

Don't worry, you don't really need to listen to it at all because the main point I wanted to make is that this song is the story. of. my. life. Actually, just really the title, so I suppose if you've never heard it (while you might be seriously unsocialized =P), you're not missing anything.

Yep, livin' on a prayer is a good description of my life right now (and I supposed SHOULD be a description of our lives always...). Or at least jumping from prayer to prayer hoping to make it to the next one before things crumble...or while things crumble...whatever, same thing, right??

Anyway, the purpose of this post is to ask for some more of those prayers to keep me going for the next few weeks! As always, thank you for lifting up the prayers that I live on daily and coming alongside us on this crazy mast cell life we've got going on right now.

If you missed it, I'm now officially a year older!! I'll leave the suspense of the actual day up for debate since I'm not a fan of everyone knowing my birthday (funny story: I didn't even tell Nick my birthday until we were engaged and almost married =P). Let me just say that while I don't specifically feel a ton older, there is something about being 27 that feels practically 30. Runner friends chime in here, but as we all know, when you're running 10 repeats of a drill, when there's only 3 repeats left, it's pretty much already the last one before you're done...yes, you still have 3 more, but let's be real, the 2nd to last is pretty much the last and the last is definitely the last, so the 3rd to last is basically the last. So going on that runner logic, I'm basically already 30...NOT READY!!! Good thing I actually have 3 more years...

The next couple of weeks are bringing appointments and testing (surprise, surprise...), travel that will hopefully be fun, and stress that will definitely come from the traveling. Please be praying for well behaved mast cells and that my body with cooperate during these next couple of weeks.

So what's coming??

This week I have a few doctor's appointments. Last week I had an explosion of pain in my head and lost my vision in my right eye due to some jaw pain that had building for almost a week prior. Thankfully it is nothing serious, but I do have some pretty significant muscle tension in my jaw/neck/etc. that was causing sharp, shooting pain through my jaw and head. I saw a chiropractor last week who helped considerably, and I'll be continuing treatment for another few weeks. The appointments are fairly painful and often trigger symptoms for a few hours after, so prayers for a quick recovery this week would be great! Because...

I also have my Xolair injection this week! If you've been following my blog super closely and tracking every post, then you will notice that this is actually 3 weeks since my last injection. (If you're not that hard core of a follower, then guess what? It's been 3 weeks since my last injection =P). No, I did not have another bout of anaphylaxis last week (at least not that messed up the injection...) or mess up scheduling...this was actually intentional. Keep reading to find more details, but I will be traveling next week (when I would have been due had I gotten this injection on time last week). After talking with my doctor, we felt that it was better to go a week over while I was here in Ohio near my doctors than having the extra week happen while I was traveling. So yes, last week was rough, but I made it!

Xolair recovery 3 weeks ago
The last appointment I have this week is with the new neurologist I saw a few weeks ago. We had scheduled some testing at my appointment, and that will be happening this Friday. We are doing a repeat EMG (looking at nerve communication with muscles) and possibly some other testing depending on what the results show. I'm not really looking forward to this...I mean, I'm hoping we'll get some answers for my ongoing symptoms, but this was one of my least favorite tests I've had this time we're upping the ante and adding another component to get a better look at what my body is doing...not sure what that means?

Well, last time it involved sticking needles in my muscles and sending small electric currents through the needles to measure how my body responded to the stimulus. It wasn't specifically painful, but was very uncomfortable and caused multiple muscles to cramp pretty badly. If needles and electricity weren't fun enough on their own, this time we're adding a bike! Yep, this time we're doing the same thing, but instead of just lying down, I'll be on a stationary bike...sounds like as much fun as a barrel of seriously, I hate monkeys...Because a lot of my neurological symptoms only occur during exercise, we need to simulate exercise and do the testing during I said...barrel. of. monkeys.

But that's okay, because once that is over, I have something super exciting to look forward to! Ready for it? Leni and I are going to Florida!! My dad and I are driving to VA on Saturday, and my mom and I will be flying to Florida on Sunday!! So this is what? Prayer request #4? Something like that =) Anyway, while I have recently had some success with airplane travel, it's always a big prayer that things will go smoothly. Anaphylaxis at 20,000 feet is not fun...

Photo from our last mother-daughter trip =)
So what's in Florida you might ask? Well, alligators and flamingos (maybe??) and turtles (seriously, it's a $500 fine if you run over one in your car) and I'm sure lots of other fun critters. While I am certainly a huge fan of native fauna in any given area, that's not the main reason we're flying down. We are going for 2 reasons. We'll be there for a week, half spent on business for Trippin' with Jamie and half at a conference.

I've posted a few times about Trippin' with Jamie which is the travel agency my mom started a few years ago. This past spring, when I had to stop working outside the home, I began working for her as an additional agent. (So give me a call to plan your next trip! =P) The first half of the week will be spent doing business scouting at DisneyWorld. Yes, I did just say we will be WORKING at Disney. While we will spend time in the parks, our main goal is to check out the various resorts and new attractions to be as up-to-date as possible for clients interested in going to Disney in the near future. Prayers would be greatly appreciated that I will feel well enough to get out and be active with my mom, that the heat will not be too bad, and that the hurricanes will find a new target while we are there.

After a few days scouting out Disney, my mom and I are heading to the annual mast cell conference. I am excited to spend a few days with other mast cell patients and some of the top doctors for these conditions. In being diagnosed with a rare disease, it is rare for us to meet in person (although I have met one other person in my area!). Rare in the USA means that fewer than 200,000 people have been diagnosed. It is believed that my form of mast cell disease (MCAS) may not actually be rare, but for now, is still considered to be until awareness reaches a point where doctors are familiar enough to actually identify patients that may be impacted and have the ability to effectively test for it.

Anyway, I am excited to spend time with other mast cell patients and connect with people dealing with the same things I am. While I have the best family and friends I could ever ask for, there is still something special about connecting with other people walking the same road I am. It will be a mix of lectures given by some of the top doctors for mast cell disease, and patient sessions where we can connect with others with our same diagnosis or that live in the same part of the country. I'm also excited to meet other people with service dogs for mast cell alerting!

So we'll be in Florida for a week, then we're flying back to VA. Nick is driving from Ohio to hang out with my dad and brother (who will be in from San Francisco) for a day, then we'll head back to Ohio. We'll get back on a Sunday, and I'll be up for my next Xolair injection on Monday.

Sometimes it's tough to have to schedule my life in 2 week blocks knowing I have to be able to get to my doctor for my injections to keep feeling okay...I wish that didn't always have to be the main factor in my life when it comes to planning anything...but it is, and I'm very thankful for the improvement Xolair has given me, so for now, I'll continue to spend every other week hoping I remembered cash for the parking garage (thank you parking garage attendant for giving me IOUs for the times I forget...) and being thankful to be able to do some traveling again thanks to these injections.

At the high risk of sounding like a horribly broken record, THANK YOU. I am constantly humbled and thankful for the many people praying for me and my family right now. I hope (and we're praying!) that some day I'll graduate from the urgent-prayer-needed list to the so-thankful-for-where-we're-at-so-let's-pray-it-stays-there list, but for now, I'm learning to be content with where God has me. I am so very grateful to be able to do some travel thanks to my much needed service humans (i.e. Nick and Mom =P) and Leni and a significantly improved treatment protocol that is helping me regain some of what I have lost. I'm not healed (yet) and still spend days at a time sick and unable to do much, but I also get longer respite than I used to and have moments where I can attempt things I wouldn't have even considered even just months ago (i.e. airplane travel, running, eating, etc.).

I look forward to the day that I can be a testimony of God's healing, but for now I can be a testimony of God's healing. Confusing? I me, I know. BUT I also know that God works in ways I couldn't imagine in my wildest dreams (and I have some crazy ones...just ask Nick =P). He is working behind the scenes bringing about healing in areas I never thought to pray for. I'm definitely improved from where I was this time last year, and for that I am incredibly grateful! In another year, I could be even more improved, and how awesome could that be?!?! In another year, I could also be sicker than I ever have been...unfortunately that's the reality of life with a chronic illness. Instead of worrying about what could be, though, we choose to focus on the healing I've already seen and enjoy every moment of "health" that I have.

And we do that by "livin' on a (many) prayer(s)" offered up for us every day. The joy and contentment that we choose to live in every day are not things that we embraced overnight. It has been a process of learning how to trust God's plan and the healing He is bringing and will continue to bring about in my life...whatever that healing may look like. I may not be the picture of physical health as this world imagines, but I am a picture of God's ongoing healing and sovereignty.

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