Friday, October 28, 2016

Leni's (My) Gotcha Day!!

One year ago today, Leni came home with me for the first time. As I was writing this blog, I initially titled it "Leni's Gotcha Day" since whenever we talk about rescuing dogs or bringing home a new puppy we refer to it as their "gotcha day." But as I kept writing, I feel like it was more MY "gotcha day" not Leni's. Today is the day Leni stepped into her role as my protective shadow to help me regain some semblance of control over my crazy, unpredictable symptoms. Today is the day Leni became more than just a fluffy poodle, but a critical part of my health management. Today, Leni "got" me as her job and graduated into her role as medical alert dog.

This past year has been a wild ride! You guys have seen glimpses of it as Leni has sharpened her alerts, I have become more attentive to listening to her, and we have grown together as a service dog team.

In the car after her first alert! What a good Leni Bean!
I remember her first spontaneous mast cell alert (meaning, I didn't prompt her) almost 2 months after she came home. We were at the Christmas concert at our church. Toward the end, she started getting restless and trying to get up, and I kept ordering her back down. We went back and forth several times before she stopped listening and started putting her paw in my lap despite me telling her to lie down again. She finally listened, but didn't stay down long before she was up again and pawing me again. It was only this second time that it occurred to me that she might be alerting. It caught me off guard so I didn't even feel like I knew what to do! About 15 minutes later, her alert was proven accurate as I started developing mast cell symptoms. Thankfully my cluelessness didn't results in an Epipen or ER trip this time! Since this first mast cell alert, I can say that we have both gotten much more in tune at reading each other.

To say Leni has changed my life would be an understatement. You can read that throughout my blog. Because of her, I now get warning before my severe mast cell reactions. I can start treating 15-20 minutes before my symptoms start. This means that sometimes, I can keep my reaction at bay and only experience minimal symptoms. Other times, I will still end up in anaphylaxis...but the difference is that now I get WARNING. I am prepared in case things do get worse. I can make sure I am somewhere safe. I can call Nick or get someone to help me. I can't stop all my reactions, but I can at least have a heads up that it is coming. Leni has helped me regain even a tiny feeling of control over these crazy symptoms. Nick and I have been able to attempt day trips and vacations we might not have otherwise, because the fear of unexpected anaphylaxis is much less. I don't fear as much random, out-of-the-blue anaphylaxis because I know that most times now, Leni will let me know when things are coming before my symptoms actually get bad.

ER trip due to low blood sugar that we couldn't get above 55.
She has also made a huge difference in my blood sugar management. The neurological symptoms that I developed last summer that left me barely able to walk were (at least partially) connected to chronic, severe hypoglycemia. I could not get my sugars to stay above 60...I was starting to see chronic neurological symptoms due to my brain not receiving the nutrition it needed since the only fuel source for the brain is glucose. I am hypoglycemic-unaware which means I don't feel my low sugars until they get into the 50s (sometimes not until the 40s...). By the time I feel it, they are already in dangerous territory (can cause passing out, impaired cognition, etc.) and it can be tough to get them up into a normal range. Since Leni is trained to alert when my sugars drop below 80, we have slowly been able to stabilize my sugars. It is so much easier to raise a sugar of 72 than a 52! These sugar alerts have been so important in reducing many of the neurological symptoms that were connected to this severe hypoglycemia.

As you can tell, I am so thankful for Leni and glad to have her as my protective shadow. But if I were to end this post here, I would be leaving out a huge piece of our story that I never want to forget...all the people who invested in Leni and her training without ever having known me. I cannot say enough good about Buckeye Service Dogs and the incredible work they do with these dogs. I am in touch with other handlers from BSD (one who has Leni's sister!) and we are all so grateful to Christy and her team for the time they spend on these dogs.

Because of Leni and BSD, trips like the one Nick
and I just took to Yosemite (and our trip to Disney 
in Sept.) are possible because we know we have 
an early warning system before a major mast cell 
reaction. It gives us some peace of mind and a bit
of control over my unpredictable symptoms.
One piece of our story that is such an incredible point back to God is the way that Leni and I got paired together. Leni was chosen as a puppy to be a service dog prospect. As she grew, she was selected to be matched with an incredible lady (and now dear friend!) with Myotonia Congenita. Two of Christy's trainers spent the most time working with Leni teaching her basic obedience, public access skills, and disease specific tasks for Kelly. As her training neared the end, however, they realized Leni (at just barely 50 lbs.) was not going to be a large enough dog for Kelly who needed a dog for heavier mobility work. The search was on for another dog for Kelly, and Leni became an almost fully trained service dog with no job...right about the same time we were beginning our service dog journey with BSD.

It was definitely a God-thing that my service dog needs, Leni's already trained tasks, her potential for future scent training, and our personalities would be aligned so well along with the timing of her becoming handler-less and us starting the progress of finding me a service dog...it still amazes me how many pieces came together in a perfect way at the perfect time for Leni and me to become a team! In addition to the growing bond that Leni and I have, through this journey, I have also connected with some people who have become so special to me along the way.

Puppy Leni! Somethings never change =P Photo
credit to either Sara or Katie!
Obviously the work Christy puts in to finding the ideal match for each of her clients and the disability-specific training was so important to me and Leni being paired. But never along the way did I ever feel like just a "client." We are forever a part of the Buckeye Service Dog family. They have changed my life, and I am so grateful for people so willing to invest in the lives of people they have never met. Along the way, Christy was (and is) always available to answer questions and help Leni and me transition from just dog and owner to an incredible team. I have met two of the trainers that had a huge role in raising Leni from a puppy and teaching her tasks specific to Kelly's and (later) my disabilities. Katie and Sara worked with Leni for months at a time teaching her basic obedience, how to behave in public, and specific service dog tasks that have been so important for me. Knowing now how Leni can be sometimes, I'm sure they had both good times with such a goofy poodle and moments of wanting to pull their hair out because Leni wouldn't. put. down. the. stinking. squeaky. toy!!!!! I am so thankful for their hard work to make Leni the incredible service dog she is for me today.

The last person who has become so special to me along this journey is Kelly. She is an incredible wife and mom of 4 who has become such a dear friend through our common bond in Leni. The first time I met her, I actually felt awkward because I now was paired with the dog who had been trained for her for almost 2 years...But that was crazy, because Kelly is such a sweet, beautiful, strong woman who I am so thankful to have met! Kelly's friendship is special to me because she understands what is like to be living with a chronic illness and to be a part of the service dog community because of that. I look up to her and how she handles being a wife and mother while fighting against her body daily. Her joy and resilience are encouraging to watch as she is determined to live life fully and with a smile on her face. I am so blessed to have incredible family and friends who are so supportive no matter what my mast cell disease is doing. But there is something uniquely special about being able to connect with other people who just "get it" on a deeper level because they are walking the same road. We may not have known each other very long, but Kelly is one of those people, and her encouragement and support as Leni and I have grown as a team is something I treasure so dearly.

What. A. Year. It. Has. Been.

This photo was taken after Leni insistently alerted to a low
sugar while I was driving. Because she was so persistent, I
actually pulled over to check my sugar instead of waiting another
5 minutes until I got home. As I pulled over, I started to black out
and shake so hard I could barely pull out my glucose meter. This
was one of my lowest sugars ever, and I was shaking even after my
sugar resolved because I knew how close I had been to an accident.
I know I have said it multiple times now over the past 2 months or so, but I am so thankful to be where I am right now. A year ago was a rough time in my life both physically and mentally. I had persistent, uncontrolled symptoms with few answers. There were days I felt like I just needed to accept that things would never change. Insurance was denying treatments that my doctors felt were my best option for successful management, I was dependent on a feeding tube that just barely kept me from continuing to slip into being malnourished yet again, and I spent so much time in ERs and picking up medications that more doctors, nurses, and pharmacists knew my name than fellow exercise physiology students at Kent. To say I was discouraged and struggled to hold onto joy would have been about as big an understatement as saying it is *occasionally* gray in Ohio in the winter.

Leni was a glimmer of hope in an otherwise very discouraging season of life. We didn't (and don't) expect her to be the cure-all for me. We didn't even know if the mast cell alerting could be trained. But we were hopeful that she could at least be another tool in my health management. Well, you guys have watch our story now for a year, and I'm guessing that you will agree when I say that she has most definitely fulfilled those expectations! A year ago when she "got" me as her handler, I got a partner that knows my body better than I do and has become such an integral part of managing my mast cell disease.


Wednesday, October 26, 2016

Teal Pumpkin Project: Who's In???

When was the last time your heart rate spiked and you got that overwhelming feeling of fear...when you looked a bowl of candy? Or maybe it's that lump forming in your throat and the pressure in the back of your eyes as you desperately try to keep the tears from falling...from, yet again, a bowl of Halloween treats?

If the answer is never, then I want to invite you to join in on the Teal Pumpkin Project this year and help make 'not anymore' the answer for everyone who would answer the above questions with 'last Halloween...'

If you're not living with life-threatening food allergies or medical conditions impacting the ability to eat, then it may have never occurred to you that there are millions of children (and their parents) in the USA who watch Halloween approaching with fear, anxiety, and worry knowing it's another round of Russian Roulette and that the evening will likely end in disappointment at best...and death at worst. I know that sounds harsh, but unfortunately, that is the reality for many children living with life-threatening food allergies or medical conditions that prevent a normal diet.

If you have already adjusted your Halloween handouts to accommodate peanut allergies, THANK YOU!! Please don't mistake this post as overlooking the huge strides that have already occurred to help make Halloween an option for more kids. I am so glad that people are making an effort to include classmates and friends with severe peanut and tree nut allergies by providing fruity options in addition to the traditional M&Ms or Snickers. If you have done this, as I said before, THANK YOU! But please, go one step further this year...

Please take a moment to consider (or become aware of) the thousands of children who cannot eat any candy at all. Maybe they have Eosinophilic Esophagitis (EoE) or Food protein-induced enterocolitis syndrome (FPIES)...maybe they have GI motility or absorption issues and need a feeding tube or IV nutrition...maybe they have a sensory processing disorder and candy is not one of their safe foods...maybe they are like me and have mast cell disease or another rare disease that impacts their ability to eat normally or at all...

And THAT is what the Teal Pumpkin Project was created for!

It was started by a single mom of two kids in a community in Tennessee that wanted to make sure all kids were included, regardless of any dietary limitations. It is easy and inexpensive, but so important to those kids who get the chance to be a part of trick-or-treating and to ENJOY their treats at the end of the night instead of having to give them up.

Here's what the Teal Pumpkin Project involves and how you can be a part of including all kids this year at Halloween, even those who cannot eat regular candy:

  1. During your trip to the store to buy Halloween candy, take an extra 10 minutes to stop by the dollar store and pick up some non-food treats. Things like glow sticks, stickers, matchbox cars, fun pencils, notepads, bubbles, etc. are great, inexpensive options to have on hand. (Be careful choosing silly putty, play-doh, or balloons as these often include allergens.)
  2. When you're carving pumpkins with the family, take an extra pumpkin (or you can use one of your jack-o-lanterns) and paint it TEAL. Teal is the color of food allergy awareness and the teal pumpkin has become the symbol used across the country to indicate houses that have non-food toys available.
  3. Set your pumpkin out on your front porch so your neighbors and surrounding community know you have a house their child can trick-or-treat at if they are impacted by allergies, disease, or other issues that prevent them from enjoying regular candy. If possible, set your teal pumpkin out a week or so early. This gives your neighbors and community to notice ahead of time that you will have non-food options. Sometimes this can be the make or break time for parents with children who cannot have candy as they are deciding whether or not to even let them trick-or-treat. 
  4. During trick-or-treating, have a separate bowl for the non-food items so there is no risk of contamination from the candy or candy-covered fingers reaching into the bowl. As kids come to your house, ask if there are any food allergies (or ask the parents, some kids may be non-verbal and unable to answer themselves). If there are, offer the toy bowl to those kids as the other kids get candy. BE AWARE! Sometimes the toys are more popular than the candy! =P If that is the case, ask the kids which toy they would like and hand it to them. Prevent kids from just grabbing toys as this could result in chocolate, milk, peanuts, other allergens, etc. getting on any of the toys which would make them unsafe.
  5. Lastly, don't be discouraged if you don't give out any of the non-food toys. The teal pumpkin project was only begun in 2012, so it is slowly growing. Save the toys you have left for next year and know that while you may not have been able to give any out yet, as food allergies continue to stay at an all-time high, in a few years, you may have none left at all at the end of the evening.
I hope that this year, teal pumpkins will become more common in more communities. While I did not have mast cell issues or food allergies as a kid, I still know what it feels like to be the only one unable to eat at social events. When a holiday is so focused on gathering candy and a child is unable to eat any of it, it can feel very isolating. Please consider joining in on the Teal Pumpkin Project and being a part of helping all kids feel included this Halloween!


Tuesday, October 18, 2016

Bokas Take on CA

If you've been following my Instagram (@kboka27), you will have seen lots of fun photos from our recent trip to California!!! Like I said in my previous post, my brother moved to the west coast last year, and we have been wanting to get out there to visit. A very generous Christmas gift from my in-laws allowed us to stay at a condo close to Yosemite for the week, so we were set!

Leni taking a snooze (with her head on Nick's foot) on our flight to San Francisco
We flew out a week ago Friday to spend the weekend with my brother in San Francisco before heading down to Yosemite on Sunday. Unfortunately, a *slight* miscommunication meant that my brother thought we were arriving at 11am on SATURDAY, not Friday...oops! Since we were locked out of my brother's house until about 4:30pm when his first roommate would get home from work, we decided to head to the Jelly Belly Factory!

Free tours! Then they get you with the jelly bean store...
I was not feeling good the day we flew out. I had had a rough week of anaphylaxis and Xolair plus I've been having some on-going GI issues...it was not a fun combination for flying and travel...thankfully, I handled the flights okay (other than needing the bathroom 4xs on a 45 minute flight...). The cool part about San Francisco is that the views are incredible. The tough part about San Francisco is that to get those views, it is VERY HILLY!! Combined with my already not feeling so good, I was exhausted and wiped out. Touring the Jelly Belly Factory was a great chance to take it easy on the drive over and during the air conditioned tour with many options to sit and rest. Plus, that meant jelly beans for the rest of our trip!! (Okay, really just the next few days =P)


We spent the rest of Friday, all day Saturday, and Sunday morning in the city with my brother. Nick got the chance to watch a Blue Angels airshow with my brother while I wasn't feeling good, and he got to try a bunch of local restaurants as we wandered around my brother's (VERY HILLY) neighborhood. His favorite was actually in a small town about 45 minutes from San Francisco near Muir Woods. It was an Indian-inspired burrito place that was AMAZING! They were allergy-friendly, so I was even able to try some!! It was so good, we went back at the end of the week, just to eat there again =P


Sunday morning we went to brunch with my brother, then headed out for a 3.5 hour drive to Yosemite! Thanks to my in-laws, we were staying at a condo about 30 minutes from the south entrance to Yosemite. It was right on the edge of Bass Lake, and we were able to see the lake from our condo.
Bass Lake, CA
Day 1 in Yosemite we decided to head to one of the Giant Sequoia groves in the northern part of the park. It took us way longer than the GPS said to get there because we stopped so. many. times. just to stand in awe of the incredible views (and take photos =P). When we finally got to the sequoia grove, we were not disappointed! These trees were MASSIVE! The only challenging part was that it was a 1.5 mile hike down to see the Giant Sequoias...which meant another 1.5 miles back up to our car...

Giant Sequoias!!
Going in to this trip, we were hoping that we would be able to do some actual hiking and get a bit off the drive-and-park touristy routes. Unfortunately, we quickly realized that after this first day, that wasn't going to be an option. Even this short hike down left me out of breath and exhausted...and going back up was even tougher. While we definitely agreed the effort to see these massive trees was worth it, we also knew there was no way I was going to be able to do that every day. But that was okay, we just adjusted our expectations and were good to go! We made a quick stop at Bridalveil Falls on our way back, which was impressive despite the lack of water this time of year.

Bridalveil Falls with a wisp of water
Day 2 we didn't make it to Yosemite. I had a very rough night and struggled to get up in the morning. I was really lightheaded and dizzy, my heart rate was all over the place, and I was getting out of breath from just standing up. We just hung out in the morning, then headed to a movie theater to watch Storks! If you haven't seen it, we definitely recommend it! =P It was really funny and we laughed through the whole movie.

Glacier Point - You can see Half Dome in the background
Day 3 we were able to get back into Yosemite. We went to Glacier Point and Sentinel Dome. Glacier Point was incredible because you could see almost half of Yosemite National Park from that one overlook. The photos just don't do it justice. Next we headed to Sentinel Dome. This day was challenging physically. Glacier Point was at about 8000 ft. and Sentinel Dome was about 9000 ft. I really struggled with the altitude. Just walking from the parking lot to the overlook at Glacier Point got me quite out of breath and dizzy. Despite that, I really wanted to try to get to Sentinel Dome which was just over a mile hike from the parking lot. What can I say, I'm a *bit* stubborn?? =P The hike ended up being way more challenging than we had anticipated...it was very rocky and had a thin, sandy layer on top of the rocks which made it feel slick. We almost made it to the dome when we decided to take a break for me to catch my breath. Leni alerted as we sat down, and when my sugar was okay, we knew we needed to head back to the parking lot. I took some benadryl and we headed back down the trail.
Such an incredible view! Half Dome is on the right, El Capitan is just out of view on the left.
I started having a good bit of trouble as we were heading back to our car. I was just getting more and more unsteady on my feet and slipping a bit on the rocks. Between Leni and Nick, I was able to stay mostly vertical, but I did fall a couple times. The first time, Nick broke my fall and kept me from really hitting the rocks hard, but the second time I broke my fall with my wrist. =\ A few days later when it wasn't getting better and the pain was keeping me up at night, we headed to a local urgent care. It was feeling like it had a few months ago when I broke 2 bones in my hand, so we got some x-rays to make sure. Thankfully, it is just sprained so hopefully it will be feeling better soon!


For our last full day in Yosemite, we started with a ride on the Sugar Pine Railroad. After the train ride, we drove back into the park to see one more area of the park. I was pretty much out of energy at this point after a busy (but very fun) week. We headed down to the Yosemite Valley to see the Lower Yosemite Falls. Most of the waterfalls in Yosemite are dry in the fall since they are mostly fueled by the snow run-off as it melts in the spring. This one was no different and was completely dry. There were even rock climbers climbing where the water typically runs! After seeing the lack-of-waterfall, we headed back through the park to the condo, taking in one last incredible view of the park. Friday we drove back to San Francisco (with detours to the Indian-inspired burrito restaurant and an urgent care) to spend the evening with my brother before flying home on Saturday.

El Capitan on the left, Half Dome in the distance, Sentinel Dome on the right.
All in all, it was an incredible trip! I am still so thankful that this trip was even possible. A year ago, I could barely walk, couldn't eat, and was living from one EpiPen to the next...I am so thankful to be where I am now! Living with a rare disease means no one really knows if/when things will improve. Treatment is a game of trial and error, and we're left in this perpetual state of waiting and hoping. I know things could get bad again, but I am also living proof that things can improve, too. Was I completely healthy this entire trip and we did everything we wanted? No. But at the same time, my mast cell disease didn't win this time. I flew across the country, spent a week hiking some of it at altitude, was able to eat a good bit of solid food (even if I did throw up some, too...), and most importantly, had an incredible time on vacation.


I'll leave the rest of my reflection and deep thoughts for another post, and just finish with what is becoming my signature closing remark...THANK YOU!! For everyone praying for me and Nick, for everyone following my life with mast cell disease and helping to raise awareness, and all of us living this crazy life with mast cell disease and refusing to give up. During my roughest season of life, seeing others also fighting against mast cell disease (and having victories!) was encouragement and motivation for me to keep searching for answers. I hope that during this season of my own victories over my crazy mast cells, I can be an encouragement to others walking the same road I was on just a few months ago.

Thursday, October 6, 2016

Where in the World are the Bokas Going?

I left off the details of my last post, but as promised, here is what's up! If you guessed Yosemite Falls (specifically the Lower Yosemite Falls, ten extra points to those of you who knew that =P) and Alcatraz, well done! In case you're still not following, Nick and I are heading to California!

My brother moved to San Francisco after he graduated from college last summer to start a job. He has been living out there since and from what it sounds like, enjoying city life (how are we related??) and his new job. Nick and I have been wanting to go visit, but with my health where it was and the cost of flying, we knew it would not be a quick spontaneous trip. And so the planning began!

We knew we wanted to go for a week since the amount of time it takes to fly (plus the stress on my body) and the cost made it not worth it for a super short trip. That was the easy decision. We also knew that we didn't want to spend the whole we in the city. We're excited to see San Francisco and visit my brother, but neither of us are city people for more than a couple of days and love the outdoors. My dad has traveled all over the world and got his 50th state last year (Washington) when we went on an Alaska cruise. Of everywhere he has been, Yosemite was one of the places he said he would like to visit again. So when my dad mentioned that it was only a few hours drive from San Francisco, we were sold!

Neither of us have been to California, so we're excited. I'm also a bit nervous because I've had a bit of a rough couple of weeks. Last week I had a bout of dehydration caused by who knows what (translation: my nasty masties...) that ended with my neurologist almost calling an ambulance at my appointment on Friday...I escaped the ER on Friday, only to end up there after using an Epipen and taking an ambulance ride Monday night...Tuesday was spent recovering from that bout of anaphylaxis, and by the evening I was also enjoying my normal post-Xolair recovery....

Leni snuggles in the ER make it so much better! Photo credit to our amazing friend, Katie =)
Thankfully, I am mostly recovered from both the anaphylaxis on Monday and Xolair injection (also on Monday). Now, I'm packing for our trip and praying for my body to start cooperating...

I know this a super short post, but look at it as me attempting to redeem myself after the encyclopedia-length posts that came after Disney. =) Stay tuned for a California Dreamin' post in about a week and a half! If you want to see daily photos of our adventures out west, follow me on Instagram (kboka27)!


Tuesday, October 4, 2016

Return to Regular Scheduled Programming

So now that I've posted more than enough about Disney, The Mastocytosis Society conference, and Invisible Illness Awareness Week, I will now return to the normal posts that are oh so exciting recounting recent appointments, testing, and the random thoughts that go through my head. Some days I wonder why people keep reading... =P

Just before I left for Florida, I had my second EMG. I wrote a bit about what this is in an earlier post (here), but basically it is a test to look at how the peripheral nerves are functioning. The good news is that the EMG showed that everything is mostly normal when it comes to my peripheral nerve signaling. The bad news is that means we still don't have an answer for my odd numbness patterns and on going neurological symptoms...

The Saturday after I got back, I had my second brain MRI to see if things had changed over the course of this year. Thankfully, it was okay. Nothing has really changed since the MRI I had last year, but it was a tense week. I got a call on Monday (2 days after the MRI) from my doctor's office saying my neurologist needed to see me within the week. That's not usually a good sign...

Even after dealing with all this medical stuff for years, there are still moments of anxiety when it comes to dealing with potentially tough diagnoses. This time especially, I felt overly nervous. Something about the brain feels more intense than pancreas or adrenal gland issues. Obviously I don't want any of it, but the brain is just...well, the BRAIN. Not sure exactly how to explain, but issues with the brain just feel that much more intense since it's kinda the hub for everything in the body.

Anyway, when will I learn to just stop worrying?? The MRI was fine, stable compared to my scan from a year ago, which is fantastic. My neurologist wanted to see me ASAP because we needed to decide what the next steps will be and she is going out of town for 2 weeks and wanted to make sure we were on the same page before she leftt. It would have been nice for her nurse to tell me that over the phone, but oh well! =P

Unfortunately, when you're dealing with a rare disease, there are never easy answers...or any answers...and that's just life sometimes! Since all the testing we have done so far has come back relatively normal, we still have no explanations for my odd numbness patterns, coordination losses, and other miscellaneous neurological symptoms. We've done all the "easy" tests. To keep investigating these symptoms, we're looking at significantly more invasive testing and hoping that maybe those tests will give us some answers...but doing all that with the knowledge that those tests could STILL come back inconclusive since these symptoms could be simply mast cell driven...we just. don't. know.

So here's the plan: nothing. Yep, for someone who likes to know what's going on, this can be one of the most frustrating parts of living with a rare disease. My life is lived in a weird in between of wanting to do testing to figure out what's going on and wanting to avoid rough testing to avoid potentially triggering my nasty masties. For now, despite my on going neurological symptoms, we are going to play the wait-and-see game. Oh joy...my favorite...

Leni agrees...waiting is not our favorite...
Actually, I'm okay with this decision. Like I said before, we've done the easy testing. At this point, to keep testing means we have to do stuff that would likely set off my mast cells and could cause serious issues to my overall health/functioning. There is such a fine line to be walked when dealing with some of these little-understood conditions. The invasive testing is not off the table indefinitely. We decided to revisit things in 4 months. I'll have another full neurological evaluation and see if/how things have progressed in these next months. If things are progressing in that time, the risk/benefit of the invasive testing may have changed and we may need to reconsider. For now, though, my neurologist and I feel comfortable waiting it out and monitoring my symptoms for another few months. Of course, if anything comes up within this time frame, things could change, but for now, we're playing another round of hurry-up-and-wait! Another one of my favorites...

In other news, not much has been going on. After Florida, it's been a lot of recovering from all the travel, getting Xolair, catching up on my dissertation work, and now, prepping for our next trip! I got my next round of Xolair yesterday, and am currently in my post-Xolair recovery phase. That should clear up by Thursday (hopefully!) which is good because...Nick and I are heading out of town on Friday!!

Image result for photo of yosemite falls
Name that waterfall!
Image result for photo of alcatraz
Unfortunately we won't make it here, but it's close to where we will be...any guesses??
I'll hold off on spilling critical details to keep you in suspense, but don't worry, I'll spill the beans in a couple of days! =) (Photos are a not-so-subtle hint!) I'll just say that we are very excited and have been looking forward to this since we started planning and saving last year (yes, this has been in the works for over a year...what can I say, I'm a planner =P). We didn't take a honeymoon after our wedding, so this will be our first time traveling just the two of us (plus Leni) that's not to a doctor or hospital. Hope we've reached the proper adulting status to actually be able to handle this?!?!

Saturday, October 1, 2016

Invisible Illness Awareness Week: 30 Things 2016 version

Every year for Invisible Illness Awareness Week, this "30 Things" blog theme comes around to raise awareness for some of these unseen conditions that can still make a huge impact on the lives of those of us that live with them every day. I've done this for 2 years now, and it's been kinda cool to see my medical journey unfold and how things have changed even just in the couple of years I've done this blog. So, to celebrate the final day of Invisible Illness Awareness Week, here is the 2016 version!

Photo is from our wedding, just over 2 years ago.
This was pre-diagnosis...what you don't see is
that I had been on a liquid diet for almost 2
months at this point. Three days later, Nick and
I would make our first ER trip as a couple. THIS
is why we need Invisible Illness Awareness Week.
1. The illness that I live with is Mast Cell Activation Syndrome (MCAS) which is a form of mast cell disease. I also deal with various other chronic illnesses as a result of this mast cell disease, such as POTS, gastroparesis, pancreatic and adrenal insufficiency, etc.
2. I was diagnosed with it in the year 2015. January 22, 2015 to be exact.
3. But I had symptoms since I was a senior in high school, about 2007-ish.
4. The biggest adjustment I've had to make is that I can't live at warp speed anymore. 
5. Most people assume that because I look good, I must feel good.
6. The hardest part about mornings are getting out of bed. I am typically very symptomatic in the morning before I exercise which gets the blood flowing and allows me to stay vertical for a bit longer.
7. My favorite medical TV show is House. While I'm not so sure I'd want his bedside manner, it would be nice to have a doctor so into the mystery of their patient that they won't give up until they get an answer.
8. A gadget I couldn't live without is cell phone for sure. When you're stuck in the bathroom or in bed for long periods of time, it's nice to have some form of distraction.
9. The hardest part about nights is sleeping...pain, GI issues, dizziness (yes, this can still happen lying in bed, sometimes even with my eyes closed), and more don't always make for a restful night.
10. Each day I take ______ pills and vitamins. More than I'd like, that's for sure! Also, half my medications are liquid so I don't even know how to answer this one. =P
11. Regarding alternative treatments, I am open to anything within reason. My body is *slightly* (okay REALLY) sensitive, so while I'm open to discussing non-medicine related treatment options, it's always cautiously and making sure I'm fully informed.
12. If I had to choose between an invisible illness or visible, I would choose invisible. If it's not obvious that anything is wrong, then I can pretend to be normal in certain situations if I want. Although Herman and Leni make that a bit challenging right now =P

Sometimes even with an invisible illness, things become
visible. ER visit #whoknowshowmany when we were visiting
my parents over Christmas when my blood sugars wouldn't
come up. This was less than 24 hours after doing an Escape 
Room with my family and having a fun day out.
13. Regarding working and career: Slowly but surely, one day, I WILL graduate with my PhD...some day...as I slowly creep toward that degree, I'm also working from home as a travel agent with Trippin' with Jamie!
14. People would be surprised to know I pretty much lived on slurpees for almost 4 months. Okay, maybe not a surprise, but it's true!
15. The hardest thing to accept about my new reality has been that I'm not the same person I was 5 years ago, and that's okay!
16. Something I never thought I could do with my illness that I did was eat solid food and run again!
17. The commercials about my illness still don't exist. Although I did recently see a commercial for one of the medications I take, so maybe that counts for something...although it wasn't advertised for the reason I take it...
18. Something I really miss doing since I was diagnosed is traveling spontaneously without having all sorts of medical supplies, TONS of planning, and having to know where the closest hospitals are.
19. It was really hard to have to give up my GA position at school.
20. A new hobby I have taken up since my diagnosis is being a travel agent! Does that count? Maybe not a hobby per se, but I'm working for Trippin' with Jamie to help people plan vacations!
21. If I could have one day of feeling normal again I would BE SPONTANEOUS!! I'd do whatever we felt like doing that day with no planning needed.
22. My illness has taught me that faith to believe that God can and will heal me while also trusting that He is still good even if He doesn't heal me is an incredible place of surrender and freedom. 
23. Want to know a secret? One thing that people say that gets under my skin is "You look so good!" I get it, people are just trying to be nice. But often I don't feel well and am just trying to get out of the house. 
Waking up after a procedure where my body tried
to go for a full blown mast cell reaction....
thankfully some benadryl and breathing treatments
(and a snuggly poodle) kept things from spiraling
out of control. This was less than 2 days after
spending a week in VA with my family.

24. But I love it when people send me random texts or facebook posts.
25. My favorite motto, scripture, quote, etc. that gets me through tough times is Daniel 3:16-18: Shadrach, Meshach, and Abednego answered and said to the king, "O Nebuchadnezzar, we have no need to answer you in this mannger. If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliever us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up."
26. When someone is diagnosed, I'd like to tell them you are still you. Yes, things have and will change. But don't lose sight of who you are because you'll always be you. 
27. Something that has surprised me about living with an illness is there aren't just blessings that we find, but also things that are truly good. I don't just have to be thankful in all cirucmstances, but there are things that I am truly thankful for.
28. The nicest thing someone did for me when I wasn't feeling well was do what all you guys do when you read this blog and keep me in your thoughts and prayers. THANK YOU! A thousand times over. Thank you for walking through this season of life with us.
29. I'm involved with Invisible Illness Week because if those of us living with these conditions aren't willing to speak up and raise awareness, how can we expect others to? And even more so, how can we expect or hope for more research or treatments if we're not willing to get the word out.
30. The fact that you read this list makes me feel thankful that you've been here for another year! I wish it didn't have to be this way, and maybe next year things will be even better. Only one way to know...stay tuned!