Friday, July 29, 2016

Ohio Service Dog Awareness Week

Who knew this week was Ohio Service Dog Awareness Week?? Obviously not me or you know I would have been so much better prepared with this blog post. Instead I'm left scrambling to come up with an interesting post with less than 24 hours left in the week...challenge accepted!

It's crazy to think that this week a year ago, we were just beginning the process of looking into service dogs and whether or not a dog could be an option for me...and I didn't even know this week existed. (Although I suppose I still didn't know this week existed this year either...)

I remember the first time I walked into a store with Leni. It was the second time I had met her, and we were with her trainer and other service-dogs-to-be during one of their weekly training outings. Even with a group of 7-8 dogs in training, I still felt super self-conscious walking into the Halloween store with a dog next to me. I felt even more like I was under a magnifying glass when Leni and I went next door to Bed, Bath, and Beyond with just one of the trainers. We were the only dog in sight, and even though none of the sales associates gave us a second glance, I felt like everyone was staring. Now, 9 months later, it feels weird when I don't have Leni by my side.

What would I do without this goof?
That doesn't mean that things are always smooth sailing. People often don't know how to react to a dog being out in public. Before I had Leni, I'm not sure I ever saw a working service dog. I know I had seen a couple puppies in training, but a full-on service dog, nope, never. Even in the 9 months since having her, other than when we do training outings with Buckeye Service Dogs, I've only seen one other service dog. Whenever we are out and about, I get lots of comments about Leni...how cute she is, how well behaved she is, and whether she is mine or if I'm training her.

One of the biggest adjustments I had to get used to was the fact that I am sick being on display. According to the ADA, service dogs can be used by disabled individuals to perform or assist a person with something they cannot do by themselves. Having Leni has been so incredible for her alerts and giving me some semblance of control over my otherwise uncontrollable mast cells, but it does mean that my invisible illness is now visible.

One of the most common comments that I get from people is that I'm "so lucky" to have my dog with me everywhere. I typically just smile and nod because I don't really know how else to respond...but I wish I could really share what I think when I hear that.

Although this picture certainly does make me feel lucky =P
I can have Leni with me because I'm disabled...meaning I have a "physical impairment that substantially limits one or more major life activity (according to the ADA)." I won't go into the specifics, but the reality is I can have Leni with me because I have mast cell disease and she is a major part of the way we are able to manage my symptoms. I love Leni and am so grateful to have her, but know that I am 100% honest when I say that I wish I didn't need her. How is it "so lucky" to have a medical condition that can cause anaphylaxis to absolutely nothing? Doesn't seem "so lucky" to have had severe neurological symptoms from chronic hypoglycemia or to be so unaware of low blood sugars that I have to be about to pass out before I realize I'm low...

Working hard or hardly working?
I know that people mean well when they say things like I'm "so lucky" to have Leni. But the reality is that I would give anything not to need her. Am I "so grateful" to have her? Absolutely. I'm also "so thankful" to Buckeye Service Dogs for training her and "so happy" to be getting back to running with her by my side and "so thrilled" to have regained some control over my crazy symptoms...and of course "so snuggly" when she curls up with me on my rough mast cell days =) But "so lucky"...not the words I would choose.

 A year ago I had no idea the scope of tasks that service dogs could do. It has been one crazy year of learning and growing both in my knowledge of service dogs and in my partnership with Leni. While I so wish my health was not at a point where I need her, I am thankful for the health I can have because of her. Plus, thanks to Leni, I get the opportunity to not only raise awareness for service dogs but also for mast cell disease every time I have the opportunity to share about why I have her.

Raising awareness is so much bigger than just one person, though, so as always thank you to all our family and friends for learning about service dogs along with us! Please feel free to share this post and continue being a part of help me raise awareness for mast cell disease and all that comes along with it, including Leni!

Who could resist this face???

Tuesday, July 26, 2016

Hope of...Heaven?

When I was younger, I was scared of heaven. I mean, I knew I wanted to go to heaven but it was more that I definitely knew that I didn't want the alternative than actually wanting heaven.

I remember thinking that I wasn't actually a Christian because I didn't look forward to heaven like it seemed like all "real" Christians did. I prayed to accept Christ so many times when I was younger because I thought that maybe I missed a specific word or phrase that would all of sudden make me look forward to heaven...but it never did...

I felt like I wasn't really a Christian for not looking forward to it, but honestly, when heaven is described on Sundays as a place of eternal worship...what 12 year old thinks that spending all of eternity (which is a REALLY long time if you try to think about it) in that kind of heaven appealing?

You die and go to heaven, you're given a crown that you immediately give back to Jesus, then you kneel down in front of the His throne and worship God...forever...literally...sounds appealing, doesn't it???

I even remembered hearing people going through tough times saying that they could endure whatever they were dealing with because they had the hope of heaven...I didn't understand that. I mean, I understood that heaven was better than the alternative, but beyond that, I couldn't really see what was the draw for heaven.

I'd love to say that after being diagnosed with a rare disease, my perspective immediately changed and I all of a sudden longed for heaven, but that's not the case. There ARE things about heaven that I DO look forward to. I look forward to healing. Living in a perfect body without sickness or pain, yeah, I can get on board with that! Escaping the brokenness of this world and leaving behind suffering and the bad while seeing the good the way God intended it to be, yep, THAT sounds attractive....but I'm still left with a picture of heaven that sounds more appealing to my grandma than a 12 year old trying to figure out what faith in Jesus looks like.

My journey to a better understanding of what heaven is has come slowly. The first time I remember feeling a glimmer of hope that heaven might not be as boring as I grew up believing was the summer before my senior year of college. I was working at an FCA camp held at Salisbury University in eastern Maryland. I was a huddle leader (aka counselor) for the girls playing tennis that week at camp. No, I have no tennis experience...yes, all the girls were WAY better than I was...moving on!

Anyway, one night at evening chapel, the emcee for the week spoke briefly about something...don't remember what it was about...but he made a reference to what heaven might look like, and that has stuck with me. He shared that when God said "I am making all things new" (Rev. 21:5) that meant there needed to be things for God to make new. God didn't say I am making church new or worship new. He said He is making ALL things new.

God gifts each of us with gifts to use on this earth...and that those gifts will be revealed all the more fully in heaven. Some people have the gift of leading worship; they'll be some of the people leading us in praises around the throne of God. Others are gifted in teaching; they'll be helping us understand all that makes no sense to human understanding. Some people are gifted in sports, and yes, I think they'll be present in heaven, too; they'll be the ones glorifying God with the very body He gave them. For all the children and adults living in broken bodies on this earth, heaven may be the first time they ever run or kick a ball or swim or ride a bike. And you better believe that God will be glorified in every unlimited, non-painful movement. Can you imagine the face of God as He watches His precious children take their first steps as they are finally able to discard a body broken by the weight of sin?

One of my favorite quotes from Chariots of Fire (the story of Eric Liddel) is when Eric states "God made me fast. And when I run, I feel His pleasure." God created Eric to be an incredible athlete and through that, God was glorified. When God says He makes all things new, I think that Eric's ability to glorify God will be revealed in a new, more complete way in heaven. Do I think that Eric is spending his eternity worshiping and praising God? ABSOLUTELY! Does that necessarily mean he has to be on his knees? Nope. I think Eric is running all throughout heaven glorifying God with a body that can never over-train or get injured.

Our God is a creative God. We're always told just to look at the earth and the people in it to know that there is such incredible creativity, diversity, and variety in creation. And God didn't all of a sudden run out of His creative juices by the time He got to man. He saved the best for last. We are so very different BY GOD'S DESIGN. Heaven is not a place for the very things that manifest the glory of God to all of a sudden to become cookie-cutter. Instead, heaven is a place where all our differences are highlighted so that God is glorified more fully than we could ever do on earth. The things that we enjoy or that make us tic here on are earth are desires and interests placed in our hearts by God. Going to heaven doesn't mean we lose who He created us to be; it just means that it will be manifested more fully with God at the center of all that we do.

When I first heard heaven explained this way at that FCA camp, I finally felt a small tug of longing for heaven. It wasn't immediate, and at times still feels painfully slow, but my understanding of heaven began changing that day.

DISCLAIMER: I'll be completely honest, what I wrote above, I don't have specific verses citing everything I wrote or a stamp of God's approval saying that what I just wrote is 100% true. There are more verses mentioning hell in the Bible than there are of heaven...maybe that's why I knew what to fear but not necessarily what to look forward to. Heaven is and always will be somewhat of an unknown.

That being said, though, what I wrote IS based on my growing understanding of who God is and His heart for His creation. God is a good god. He created us in His image, which I think we can all agree is so incredible we will never fully understand everything about Him until heaven. He is a creative god. He has a purpose for everyone on this earth and because of that, we all are unique in the ways that we serve and glorify Him. The talents and gifts we have here on earth were given to us by God. These things I know are true.

And as I continue to grow in my understanding of who God is and in my relationship with Him, my desire for heaven also grows. Like I have said many times before, I do believe that I will be healed one day. If that does happen here on this earth, then I look forward to being able to serve God more fully in the ways that He has gifted me and with the desires He has placed on my heart. If it's not until heaven, well that's just one more reason for me to look forward to eternity.

Hope of heaven to me now means looking forward to a closer relationship with God by living fully in the gifts and desires He has given each of us...as best as I can here on earth and then so much more fully in heaven. It means using the life I have been blessed with as best as I can in this broken world knowing that one day, all the brokenness and pain and hurt and suffering will be gone and all that will be left is what God Himself designed for us to be. Those moments that I truly feel the presence of God during times of service when I can see beyond myself to the work that God is doing...despite the brokenness of this world...How much more fully will those moments be revealed when there is no more sin to get in the way or mess things up or drag us back down or distract us? When all that is left is the beauty of God and the perfection of what He designed?

That is what I can look forward to. That is my hope of heaven.

Wednesday, July 20, 2016

Special Needs Traveling

If you read my previous post, then you know that last week Nick and I traveled to Austin, TX for a wedding. I thought I would do a blog specific to what my experience is like traveling with mast cell disease and a service dog. In case you were wondering, it's a bit more complicated than just packing and leaving.


One of the challenging things about traveling with a chronic illness is that there is no wiggle room for error. If Nick forgets a belt or tie, we can run out to the store and get one last minute. If I forget a medication or my nebulizer, it's not so easy to replace...

So what does packing for a trip away look like living with mast cell disease? Here goes!

I have one duffel bag that I typically use for all my medical supplies. If you are flying, you can bring an additional carry-on bag (beyond the 1 per passenger plus 1 personal item) as long as it contains ONLY medical supplies. Since we were flying, we took advantage of this option. I never check any medical supplies. I cannot risk this bag getting lost or delayed, so I always carry it on (translation: Nick carries it for me).

Here is what goes into my medical bag:
  • Herman supplies: feeding tube bags, scissors, formula, pump charger, tube pads
  • Medications: weekly pill organizer, extras of all my medications in original bottles, emergency medications, syringes, extra test strips, epi pens
  • Miscellaneous supplies: gauze, alcohol swabs, q-tips, antibacterial wipes, hand sanitizer
  • Leni supplies: food, collapsible bowls, toys (usually a bone and squeaky), boots, cooling vest (or coat if it's winter), travel bed, treats 
Because Leni is a service dog, she is considered to be medical equipment and not a pet. This means that any of her supplies can also be packed in my medical bag. Another thing to note is that the amount of these supplies depends on the length of the trip. I always pack 1-2 extra days just in case we get delayed. I also sometimes ship my formula ahead of time since it can add a lot of weight. For this trip, though, because we were only going for a long weekend, we chose not to ship my formula ahead of time. That meant I (Nick) carried it in my medical bag with my other supplies. 

Beyond just my medical supplies, I have another bag of "regular" travel stuff. Even with that, though, there are some considerations that I have to make before packing. Here are some of the things I had to consider when packing even just my clothes for this trip.
  • We were traveling to Texas. In July. Can you say HOT? My body does not regular my temperature properly so being in a hot environment requires careful planning and awareness. One way we managed this was with my cooling vest. I have 2 but the one that I prefer works through evaporation. It is soaked in cool water before use and as I am out in the heat, the moisture evaporates which helps keep me cool.
  • One of the ways that I am able to manage a lot of my POTS symptoms is through exercise. I really cannot just take days off or I will struggle. Especially in an already stressful environment, it is important for me to make time to workout. This meant that I also needed to pack clothes for running or the gym. Because of my feeding tube, I use an adapted SPI belt to prevent it from swinging around during exercise. I also use a Camelbak to keep my epi pens, emergency medications, and medical information on me whenever I am exercising. I have running shoes that I use for...running...that I brought in case we were able to run (depending on the temperature in the AM). In addition, I use compression socks for multiple reasons during my workouts that I needed to pack, too. As you can see, this adds almost an entire extra bag with workout gear and miscellaneous supplies that go along with exercising.
  • Since we were going for a wedding, I needed a dress. Yes, I did say that...I do, on occasion, wear something other than athletic clothes =P Anyway, choosing a dress is complicated and not just because I'm picky or don't like wearing them. Because I have Herman, I need a dress that will work with a feeding tube. What does that look like you might ask? The dress can't be super tight because Herman sticks out a bit and it is very uncomfortable if it is compressed by tight clothing. It also needs to be somewhat flexible and a soft material because one of things I deal with fairly regularly is bad swelling. On a bad day, my skin is very sensitive and tender to touch so I need something that won't irritate it further. It also needs to be adaptable for Herman! I usually have him come out the bottom of my shirt...not really an option with a dress. It needs to have a way to be adapted so I can still use Herman while wearing it. Do you see how this gets complicated?? And we haven't even gotten to the shoes yet!!
  • Layer, layers, and more layer. Again, since I don't regulate my temperature well, I always plan for all sorts of environments. Even though we were traveling to Texas in July, that didn't mean that I only packed shorts and t-shirts. I also had pants, sweats, sweaters, and long sleeves. Yes, it seems like overkill, but I know what it's like to be stranded on top of a mountain in Costa Rica in a 50 degree rainstorm in only shorts and a t-shirt (story for another post =P), so I'm an overpacker now.
I could go on, but those are the major considerations I had for this trip. But preparation doesn't stop with packing!

A few days before traveling, I called the airline to make sure they were aware that I was traveling with a service dog. Even though I made sure to note it when I booked our tickets, I always want to confirm when it gets closer. I also typically call TSA Cares just to be sure nothing has changed with the screening process.

We always have to allow extra time to go through security. I take a LONG time, especially if it's a busier time. Because I run my feeds during the day, I am usually already hooked up by the time we get to security. This means that I cannot go through the scanners. I also have a lot of liquid in greater than 3 oz quantities due to my medications and formula plus syringes, scissors (yes, I carried scissors on the plane), epi pens, my nebulizer, and other miscellaneous medical supplies...you can imagine that it takes a while...especially since apparently that have to individually scan every. single. item. That includes not only my boxes of formula but also every gauze pad and alcohol swab...Add in a service dog and you've got yourself an extra 30-45 minutes to make sure to plan for before your flight.

One thing to be aware of if you are preparing for a trip and will be bringing similar supplies is how you pack your bags. While you do get an extra bag for your medical supplies, know what can and cannot go through the scanners. My doctors have recommended that my medications do not go through the scanner. This means that when I get to the place where you take off your shoes and empty your pockets into the bins, I literally have to unpack my medical bag. The things that can go through the scanner get placed in bins and go through. The things that cannot also go in bins for me to carry around and the bag itself goes through. Then after all the screening is done, I get to play real-life Tetris and try to get everything to fit back into my bag...

Once we get to the gait, I talk to the person at the desk to request pre-boarding. This allows Nick and me to board first so we can sit in the bulkhead seats (flying Southwest at least, other airlines you will need to call after you book to request those seats). Since we have Leni with us, the bulkhead seats give her a bit more floor space. Boarding early also gives me a few minutes to be able to get situated. Because the Xolair injections are slightly immunosuppressive, we need to be intentional about avoiding me getting exposed to things. I use antibacterial wipes to clean the seats and window and put on my mask (actually, I usually put this on before entering the airport). I also start my pre-treatment medications at this point. Since we board first, there is usually about 30 minutes after we board before take off which is about the amount of time I need for my meds to kick in. Then we just sit back, relax, and wait for the tremors to start during take off. Just kidding! Not really...


On this trip (and really on any trip), the preparation and planning isn't over once we land. Traveling with mast cell disease is always a risk/benefit consideration...good thing I grew up with a mom who worked in risk analysis for years! Seriously, though, whenever I choose to do one activity, we have to consider what else I may not be able to do.

For example, when we were in Austin, we knew that the heat would be a huge issue for me. This meant that outdoor activities after about 9 am would be out...except it turned out that just walking to and from the parking lot became an outdoor activity in 105 degrees...We also knew going in that I would not be able to do everything I wanted, and that we would have to prioritize the activities that I did do. This meant that when I wasn't feeling great Friday night, we decided that I would need to miss the rehearsal dinner. That was disappointing, but because I allowed my body the chance to rest and recover a bit, I was able to make it to the actual wedding reception the following evening.

These are just a couple of examples from this trip of the things we have to take into consideration when traveling with mast cell disease. No trip is ever the same, but regardless of the destination there are always things we have to keep in mind beyond just normal packing and going. I grew up traveling with my family and love the memories I have from those trips. Traveling now may be more complicated, but I am so glad to have family willing to do what they can to help me travel and continue creating great memories!

So that's pretty much how we travel with mast cell disease and a service dog! Is it easy? Not really. Does it allow us to travel and do things we might not be able to do otherwise? YES! And that is what makes it worth it. I can have mast cell reactions at home sitting in bed or on a plane on the way to Texas. While we wish I didn't have them at all, the reality is that if we wait for me to be "healthy" we might not do anything. We take calculated risks and make sure we have done everything possible to keep me safe and that everything we can control goes smoothly. Traveling with mast cell disease (or any chronic illness) may not ever be easy, but with some careful planning and preparation it is by no means impossible!


Monday, July 18, 2016

Travel Update and Prayers Answered!

I love keeping this blog because it has been an easy way to keep family and friend both close and far up to date on what is going on medically and where we need prayer. As I've said before, asking for prayer is still so humbling. That said, THIS part I love being able to share. So buckle your seat belts because God answered some big prayers last week and during our travel!

My last post was a week ago, and I had asked for prayer for 2 things. One was for an easier recovery from the Xolair injections since we had travel scheduled just a few days after I saw my doctor. The second request was that we could change my Xolair schedule to half doses every other week instead of the full dose once a month. 

Both these requests were answered with YES! So thankful to God for His grace in these moments, and so thankful for the prayers you offered up for us. My doctor had no hesitation to splitting the injections into 2 and agreed that may reduce my side effects. He also prescribed an additional medication for me to use to pre-treat for our flights on Thursday (answer to a prayer that wasn't even prayed!). 

I did still react to the Xolair injection, though. It wasn't 100% smooth sailing, and right up until we landed in Austin, I was nervous. I still had my now predictable Day 2 Reaction where I am knocked down HARD by symptoms. This happened on Wednesday. That evening we left to spend the night at Nick's parent's so we could be at the airport at zero dark thirty the next morning.

I was up all night. Not an exaggeration. It was one of those where you are lying in bed (or sitting on the bathroom floor in my case) almost literally watching the minutes tick by on the clock. Add to that the millions of thoughts and worries I had about the upcoming travel...you could say it wasn't a very restful night. You could also say I spent most of the night expelling all my insides and at one point having to wipe off Leni's head because I didn't quite make it to an appropriate receptacle in time...

Anyway, Thursday morning I finally managed to get an hour of two of sleep before having to be at the airport ridiculously early. I'm not going to go into tons of detail about what going through security and traveling with a chronic illness and service dog looks like because I'm going to do an in depth post about that later. Just know that going through security takes me a LONG time. 

Many of you know that I went to Oaxaca, Mexico with our church a couple of years ago on a mission trip. On the return flight from Oaxaca to Houston, I had what was likely my 2nd anaphylactic reaction ever...only we didn't know it at the time. I reacted to the perfume a lady a few rows in front of me on the plane was wearing. I started reacting in the airport before even getting on the plane because she was sitting right across from me, but I guess being in the confines of the plane with circulated air was too much for my nasty masties. Again, not going to go into detail (if you want to read about it, click here), but that experience has made me a nervous flyer. One of the ways we manage my reactions is by getting away from whatever is triggering me...obviously not an option on an airplane. I had discussed this with my doctor before we left, and as I mentioned, he decided to add another medication to my pre-treatment regimen. Thankfully, my medication protocol seemed to work as both our flights on Thursday (and Sunday) went about as smoothly as we could have hoped. 

We did, however, discover that apparently rapid changes (all changes??) in altitude give me full body tremors. It was very odd. Every time we would take off, I would get uncontrolled tremors that would eventually fade as we leveled out at our cruising altitude. I would also have smaller tremors on the descent, but not nearly as bad. Our guess is that since we go from 0 to 40k feet in about 5 minutes and the descent is not quite as fast, that is the difference there. In addition to the tremors, I also got a nice spike in heart rate. If I hadn't been strapped inside an airplane, I probably could have run a 5k PR! It almost felt and looked like I had just had a shot from my epi pen (minus all the anaphyalxis symptoms). Nick even said I got animated and goofy during take off when my tremors were at the worst =P Don't worry, to keep all that energy from going to waste, I just danced along to my music, after all, it was like I just had a jolt of adrenaline! Just ask Nick...he was so proud =P

That was the extent of the excitement on all 4 of our flights. Please join us in thanking God for such an incredible answer to prayer! I did have a minor, almost-progressing-to-bad reaction on our last flight but easily managed. Leni was great, too! I'll go into more detail in another post, but we couldn't have asked for a better reaction (or more appropriately, non-reaction) from her. Shout out to Buckeye Service Dogs (again) for their great training and socializing!

Anyway, now that I have spent this entire blog so far only talking about our flights, I'm sure you're wondering whether we got a chance to check out the local emergency departments in Austin. NOPE! As much as I'm sure they are deeply disappointed not to have the chance to be evaluated by a professional patient whose ER evaluation experience is surpassed by no one, I for one (two if you include Nick...or who knows how many if we include all you guys =P) am SO THANKFUL that I had no severe reactions in TX. 

Don't mistake that to say that I was completely healthy and able to do everything I wanted. Unfortunately, that is just not my reality right now. But I'm not upset by what I might not have been able to do on this trip. I am just thrilled that I was able to go and everything we did was just icing on the cake (spoon in the slurpee??). We spent a lot of time with family which was great. Nick has a very large family...it seems that at every family gathering there are new people that I haven't met yet...not complaining, though! It was so much fun to meet everyone, I just hope they don't expect me to remember who was related to who and which kids go where because there are just so many people! (Plus everyone will be wearing different clothes next time I see them so there's REALLY no hope...)

I made it to the big family get-together on Thursday evening after we arrived and to the wedding reception on Saturday night which is the main reason we went. I did miss the rehearsal dinner on Friday night, but we made the decision it was better to sacrifice that evening than to risk pushing my body past its limits. I did have to leave early both on Thursday and from the reception, but again, I'm not focusing on what I missed, but what I was able to do. Everyone knew I was dealing with health issues even if they weren't familiar with mast cell disease (hey, half of the doctors I've seen have never heard of it, so they're already one step ahead of that!). They were so accommodating and just family. It didn't matter that I just met them this weekend or only once before. So THANK YOU Boka family! Thank you for making me feel like family. I can't wait to see y'all (see what I did there??) again!

As always, Nick was such an incredible husband the entire weekend. I may have professional patient status, but he has platinum five star caregiver status raised to the nth power...especially at 6 am on Friday and Saturday when I dragged him out of bed to go running. Yes, we ran in Austin...Texas...in July. Since we went out so early, it was manageable. I wore my cooling vest (so did Leni!) and since I'm still run/walking, had plenty of breaks. While I also would have preferred to sleep in some since we were on vacation, we both knew that for me to get the most out of the days, I needed some form of exercise to help my body adjust to being vertical after lying horizontal all night. Thankfully, I was able to managed the morning temperature alright. Later in the day is another story...

Anyway, overall, the trip was a huge success! We had a great time, and mast cell disease didn't win this time. As I mentioned earlier, I'll have another couple posts coming in the next few days with more details on traveling with mast cell disease and Leni. Until then, know that we are so grateful for your prayers. Both desperate needs were met last week, and that's VICTORY if I ever saw it. 

Leni perfecting her southern drawl. 

Monday, July 11, 2016

Prayer Warriors Needed

I hate that I am so dependent on my medications to be able to function...and I hate that sometimes what seems like a small, practically insignificant detail to someone else is a MAJOR issue for me. Like the tiny mix-up that happened recently with my allergist...

Scheduling my Xolair injections is a bit tricky at times because my doctor practices out of 2 different locations. Their main location is where they receive shipments and due to some regulatory laws, they are not allowed to transport anything between their offices. That means that I can ONLY get my injections at the main office and they are only there on Mondays and Tuesdays.

I had no wiggle room for my July Xolair. The first day I was eligible for my injections was Tuesday the 5th, and I HAD to get my injections then. The following week was not an option because Nick and I had plans to go to an out of town wedding later in the week. Even though we weren't leaving until Wednesday, I get knocked down so hard form the injections, I'm not usually over them until Friday...mixing travel with Xolair hangovers is NOT a good idea.

I called about 2 weeks ago to confirm that my allergist's office had received the next Xolair injections and that my appointment was good to go for Tuesday, July 5. Everything was fine until the receptionist said that she would need to change my appointment because my doctor would not be in the office the week of the 4th (which includes the 5th in case you were wondering). I had a moment of almost panic...what was I going to do??

We confirmed that I could not get the injections until the 5th at the earliest and there would be no doctor there to administer them. Unfortunately my doctor works in a primarily respiratory office meaning there are no other allergists/immunologists on staff who are legally allowed to give these injections. I had no choice...waiting until Monday, July 11th was my only option. In the meantime, here's what my week looked like...


Thankfully we made it with no ER trip this time.

Here's where prayer warriors are needed:

Please be praying for my recovery from these injections! As I said, Nick and I are supposed to be leaving Wednesday evening for the wedding. Not getting my injections until 2 days before (especially since day 2 is usually the worst) is NOT COOL...but I have no choice.

The second prayer request is almost even bigger. I potentially have the option to receive my injections twice a month at half a dose instead of the full dose once a month. This was proposed as an option that might decrease my side effects but still give me the benefit from the Xolair. We didn't think it would be an option until August at the earliest, but considering the situation, I will be talking with my allergist on Monday if we could try that starting this month. This could potentially reduce the hangover I get and make our travel that much easier. Please pray that my doctor would be willing to listen and consider this option. Also pray that our hopes will be true and I will still get a benefit without the side effects.

I am likely either heading to my allergist as you read this or already in my appointment. Please take a moment and pray for these needs. And as always, please pray that regardless of what the answers to these prayers are, that Nick and I would be at peace and able to make any decisions necessary without anxiety or worry.

Thank you again for walking this journey with us and being a part of our lives. Some days I know I'm riding your prayers to get through. Thank you for taking time out to pray for us! Especially those of you reading this who have never met either me or Nick, know that we appreciate you so so much!

Saturday, July 9, 2016

A Year of (Not) Running

It's just about mid-July.

This time last year, I ran my last run before I started dealing with significant losses in my balance, strength, and coordination that impacted even my ability to walk for the better part of 6 months. I went from being able to run 8 miles at a time to being unable to walk from the parking lot into our church without help. No healthy 25 year old expects to lose something as simple as the ability to walk. Hey, no chronically ill mast cell disease patient expects that either...

When my symptoms first started, we thought it was just dehydration or fatigue or a medication reaction, something we could explain. It started gradually, so when it only happened every so often, it's way easier to ignore or brush off or just assume it's some weird mast cell reaction. But when it started happening more frequently, and then stopped going away...that's when I finally had to admit that something was wrong...

After a visit to my primary care resulted in a potentially abnormal brain MRI (seriously, when is a brain scan "potentially" abnormal, right??), it was all I could do to keep myself from getting anxious about something I couldn't control. My first neurology appointment ended with us being able to rule out some major (read easily testable) conditions and agreeing that my symptoms were very odd. We decided that I would start physical therapy and would come back in 6 weeks.

Fast forward to November and while there was no visible improvement, we had moved closer to a possible explanation...chronic hypoglycemia. After discovering my sugars were regularly hanging out in the 50/60 range with occasional drops even lower, we identified a potential factor in my weakness and balance issues. 

A clear EMG in January continued to suggest that my symptoms were not specifically with my extremities, but still gave no explanation for the sudden onset of symptoms. After another 2 months of physical therapy and consistent blood sugar management, my balance and strength began to improve, and I worked back to walking almost normally.

The first time I tried to run in physical therapy, I couldn't even make it 200 yards before my legs "forgot how to be legs." I remembering feeling so discouraged when I thought about what I used to be able to do between soccer and triathlons and marathon training...especially when one of my co-workers left for an 8 mile run after work...but my PT reminded me of how far I had already come and that I WOULD get back to running...

Sometimes it's hard to remember the progress already made when I can still see how far I have left to go....

I'm not ever going to say running 20 miles is easy. If I did, I'd be crazy. But trust me when I say that working up to 45 minutes of 3 minutes running/2 minutes walking has been some of the toughest running I have ever done. I can almost run(/walk) 4 miles regularly now. While I'll never deny that the marathons I ran were a HUGE accomplishment (props to anyone who has ever run a marathon, those things are intense!), there's a whole different feeling of accomplishment in every 3/2 interval I can add to my runs right now. I may not be training for marathons right now, but I'm running to prove that mast cell disease hasn't and won't win.

I remember after I ran my first marathon, I was so proud of my accomplishment. I mean, seriously, I ran 26.2 miles...in one day...on purpose! I'm still proud that I was able to run 2 marathons. Those may be the only 2 I ever run, and I am thankful that I had those opportunities. But knowing that I can run(/walk) 45 minutes now when 6 months ago I couldn't walk without help...that's a way cooler feeling. 

I'm so proud of that and not ashamed to say it only because I think it is the way pride should be. I'm proud because I know I couldn't (and didn't) get back to running on my own. There are many days that I sit and wonder how in the world people ever manage life with a rare disease or chronic illness on their own. Without the hope of heaven...without peace that surpasses any earthly understanding...without knowing that I am loved more than I could ever imagine...without complete trust that God is in control...There. Is. Just. No. Way. 

I'm proud of getting back to running, because it is one more story line in my life that points back to God. It's just another testimony that even in the midst of my crazy life with mast cell disease, I'm not fighting this battle alone. It's another glimpse of how God can use my life even when sometimes I can't see the purpose. It's a reminder that despite anything I may go through in this life, God is so much bigger than what I can see.

So when I'm running now and someone asks what I'm training for or why I'm running with a service dog or why I wear compression socks even on super hot days or why I take walk breaks during a 3 mile run while wearing a marathon shirt, I don't feel embarrassed because I can't keep up, I just smile and let God tell another part of His story.