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 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 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 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. 

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