Thursday, December 22, 2016

Week of Craziness: Status OVER

Mission: Take Back Ground from the Nasty Masties

Phase 2: Xolair

Phase 3: Port Placement

Status: Done and done!

This week of craziness is finally OVER! Now to commence with recovering from said craziness...

Monday morning I got my last Xolair of 2016. While I have not been doing well the past couple of months, I have not forgotten how much improvement I saw from the Xolair earlier this year. I am so thankful for the months of "health" I did have this year, and I hope and pray I will get back to that again in 2017.

PLUS, I found out that I still have one more dose of Xolair left. This was amazing news!!! Somewhere in all the mast cell mess, with my skipped and delayed doses, I ended up with one vial left. That means that I can get my Xolair on time the first week of the year while we work on getting it re-approved for 2017. I am SO THANKFUL. When I miss a dose, it's almost a guaranteed rough week of increased symptoms, and lately has also almost consistently meant anaphylaxis. Having the extra vial means *hopefully* we'll have enough time to get approval for 2017 without me missing a dose while my insurance company reviews all the paperwork. I'm thinking this is more of a God-thing than just a happy coincidence =)

Anyway, Monday was still my last Xolair of 2016 (since my next dose won't be until January). It actually went better than expected since I was still riding on the IV meds from Sunday's ER trip. I still had my usual post-Xolair headache, muscle aches, etc. but nothing too severe initially.

Tuesday morning was port day! We had to be at the hospital at 9:30 am to check-in with my procedure scheduled for 11 am. Nick was able to take the day off, so he went with me. I'm going to go into a bit of extra detail here than I normally would (so if you're at all squeamish about medical stuff, stop here!) because I had very little idea what to expect, so I'm hoping that my experience can help someone else in the future.


As I mentioned in my previous post, due to my severe reactions to pretty much all sedation and anesthesia, we decided for me to have the port placed while I stayed awake. Part of me felt super hard core being able to say I was going to have surgery while I was awake, part of me was so relieved that I wouldn't have to deal with anesthesia again, and part of me was nervous that it was going to hurt like crazy! So many mixed feelings!

Overall, I am very glad we chose to do this with no sedation. I think it helped my recovery be much less intensive and kept things from getting too exciting during the procedure. That said, it was a bit more overwhelming than I expected. There were 10-12 people in the surgical room, lots going on that I couldn't see, and I only knew something was happening when a doctor or nurse told me. My initial thought when they were prepping everything was "I don't know if I can do this..." But I did, and it went just fine.

The worst part was right at the beginning when the doctor injected lidocaine to numb where he was placing the port. He numbed the surface first which stung but wasn't too bad. After he made the initial incision, though, he had to numb inside where the port was going to sit...that hurt a lot...Eventually that faded and all I could feel was tugging and pressure and pushing. It was a very weird sensation to be able to feel but not have any pain.

Once it was done, it was covered with a dressing and I was sent back to the recovery area for about an hour to make sure everything was okay. Thankfully, I had no issues during the procedure and so far have been recovering well at home! I am pretty sore and it feels very tight and stiff, but I'm not in too much pain. I have started to react to the dressing, though, so we are in the process of figuring that out...thanks mast cells, thanks...I only have to keep the dressing on one more day, so that should help considerably. (Also, stay tuned for a photo of Mortimer, aka Mort the port, once the dressing comes off!)


So what's up next in Bokatopia??

Well, as awesome as my doctors are, they do like to spend time with their families over the holidays...so nothing much, at least medically...we hope...I don't have any appointments scheduled until after the first of the year, and at that point we will make some decisions about what we need to do next to get things under better control. In the meantime, we are hoping and praying that my body will play nice so that we can enjoy spending time with family during the holidays instead of making friends with new ER doctors and nurses.

As always, thank you so much for walking through this season of life with us! This was not just a whirlwind of a week but has been a far too eventful couple of months. My body is worn out and tired, and it is only thanks to all the prayers said for us that I was able to handle this crazy week without any severe reactions since lately even sitting in my bedroom has been enough to cause anaphylaxis at times. Thank you for encouraging us and supporting us and giving us reasons to smile even when life is tough.

Monday, December 19, 2016

Dr. Afrin: Check

Mission: Take Back Ground From the Nasty Masties

Phase 2: Trip to MN to see Dr. Afrin

Status: Complete...with some change of plans on the go...

We just got home from our whirlwind trip to MN for my biannual appointment with Dr. Afrin. We left Wednesday night about 8 pm, drove about 3 hours, stopped at a hotel for the night, then drove the other 9 1/2 hours on Thursday. My appointment was at noon on Friday, and we immediately started heading home after to try to out run the incoming snow storm that was headed toward Minnesota and Wisconsin. We drove about 5 hours, stopped for the night, and finished the drive on Saturday. Olympic level road trip status for the win!


Originally we were supposed to fly with an organization that provides free flights to patients and their families to out of state appointments and treatment, but an incoming winter storm grounded the planes. That meant for A LOT of driving over only a couple of days. Shout out to my incredible husband for not only doing all the driving, but doing hours of it in the dark in the midst of snowy conditions in the middle of no where Wisconsin!

We are very grateful to now have new friends in the Minneapolis area who very graciously allowed us to stay with them Thursday night (and Friday had we stuck around). Thank you Fred and Patty! And thank you Jeff and Barb for connecting us!

My appointment on Friday was scheduled for noon, but Dr. Afrin typically runs behind. He knows many of his patients come from out of state, so he always gives everyone however much time he needs to. That means we often have to wait, but we are okay with that because we know that we will be given the same consideration when it's our turn.

Could she be any cuter while we wait for Dr. Afrin??
It is always great to be able to talk with him because he is so knowledgeable about mast cell diseases. We were able to talk about the recent flare that I seem to be stuck in and see what his thoughts are regarding why all of a sudden I have crashed hard. He said typically when a patient is doing well, then all of a sudden has a sharp drop in function with a huge increase in symptoms, there is almost always a trigger. The challenge is figuring out what that trigger may have been...it could be something as small as the pharmacy got a shipment of capsules from a new supplier and something in the way the new supplier manufactures the capsules is triggering me...so minor the customers aren't informed and for 99% of people, it's no problem. But for a mast cell patient it could be the difference between being able to eat, run, and function and being almost unable to stand, completely tube dependent, and spending too much time in ERs. So we have some detective work to do!

This time last year, I participated in a research study looking at specific genetics and possible mutations associated with mast cell diseases. Dr. Afrin updated us on the results of the study which is super exciting! The preliminary data was just accepted for publication, and he recently received additional funding to double the number of partcipants! He said they are finding some interesting mutations and look forward to collecting even more data in the next year. Nick ALMOST got to be a healthy control, but the timing for the data collection didn't work out...maybe next time =)

We also discussed my reactions to anesthesia. Every time I have to be put under, I have severe reactions...so far to all but one medication that has been used. As you may have read in my last post, my tube change last Tuesday was no different. That made me nervous going in to the port surgery this coming Tuesday knowing I would have to go under anesthesia again. Dr. Afrin gave us some recommendations, but more importantly, we were able to come up with a plan for this coming Tuesday.

Basically, I'm going to have the port placed while I'm awake! I feel kinda hard core saying that... =P Although for full disclosure, at first it sounded a bit intimidating...but to be honest, I was more nervous to think I'd have to go under anesthesia again than I am knowing I'll be awake. Actually, I'm a bit fascinated by it! They WILL use local numbing medications so I won't feel anything other than tugging and pressure, but I am a bit intrigued to be "see" my own surgery. Okay, more full disclosure, I probably won't actually get to watch anything, but just being awake seems cool...at least right now =P I'll keep you posted as to how that goes!

We also discussed new medication/treatment options to discuss with my local doctors (and probably fight with insurance about). We are taking some necessary steps to try to get me feeling better again, but we also need to be prepared to try something new if things don't change soon. Not sure yet what we will try first. It will depend on insurance approvals, current symptoms that need management, and the way my body is functioning when we need to make those choices. As always, I will keep you all posted when we do get to trying something new.

That is most of what we discussed with Dr. Afrin. It seems weird that these 1 hr appointments twice a year can be so beneficial, but they truly are. There are so few doctors in the country that understand mast cell disease like he does, and his input is so valuable. I do not take it for granted that I am able to be one of his patients! I even got him to sign his book (Never Bet Against Occam) for me!


And that's a wrap! On our trip to Minnesota at least, and for Phase 2 of this crazy week of fighting my mast cells. I felt alright during the trip. Both drives were tough and I spent a lot of time sleep (some of it drugged) on our drive out to MN and was just very reactive and uncomfortable coming home on Saturday. BUT we managed with no ER trips, EpiPens, or otherwise mast cell craziness! That's a win if I ever saw one!

I did start to crash Saturday evening and wasn't able to sleep much during the night due to severe GI issues. Sunday after Nick got home from church (I spent the morning in bed and passing out trying to get to the bathroom...) we ended up in the ER to get some IV fluids, IV meds, and electrolytes. No anaphylaxis, but with Xolair and port surgery coming up this week, we didn't want to take any chances that things would continue spiraling downhill. Thankfully that helped and things seemed to be (relatively) stable, at least for now.

Stay tuned for Phases 3 and 4 of this week's mission! Thank you for your continued prayers and encouraging texts and notes. Even when I don't reply immediately, they do not go unread, and I am very thankful for every one of you walking through this season of life with us!

Wednesday, December 14, 2016

Tube Change: Check

Mission: Take Back Ground From the Nasty Masties

Phase 1: Feeding Tube Change

Status: Success...with some excitement...

This week was the start of a crazy week of procedures, travel, and more procedures. As I mentioned in my previous post, we decided to change my feeding tube to see if that would help resolve any of my relentless GI symptoms. This was done yesterday, and I am glad to say the tube change went well! Everything else was a bit rougher, but I did make it home late last night...about 11:30 pm...it was a long day...

Our first challenge was keeping my blood sugar stable from midnight (which was more like 9 pm when I went to bed) until 2 pm when it was time for my procedure. Thankfully we had no hiccups with this and while was sugar was low normal when they tested, it was not super low. Yay for small blessings! Next up was making sure everyone knew what was going on and what meds I needed PRIOR to the tube change as well as during the procedures. This was a little less smooth sailing, but eventually we did get things straightened out with the anesthesiologist and doctors. I think when we mentioned that I'm a high risk for anaphylaxis and they needed to have Epi ready in the procedure room that they started to realize they needed to take things seriously.


The anesthesiologist ended up being absolutely fabulous and stayed in the room with me the whole time (instead of rotating between rooms) and did a great job keeping me as stable as possible. Unfortunately, I ended up reacting to one of the medications they gave me during the procedure so we have yet another anesthesia medication to cross off the safe-for-kylene list. This also meant that recovery was a bit more exciting than we hoped...

I don't remember most of the day...I remember being taken into the procedure room around 3 pm and the anesthesiologist assuring me that he and his team would take good care of me. Then I remember small bits and pieces in recovery, but I wasn't fully conscious until about 9/9:30 pm. In between, there was some inhaled epinephrine, more benadryl and pepcid (I got some prior to the procedure as well), steroids, more fluids, lots of nurses, a couple doctors, and 3 different recovery units.

Thankfully while it wasn't until almost midnight, I was able to come home last night. Plus, since I got so many different IV medications, I was finally able to sleep through the night and have a relatively quiet mast cell day today! That has been one nice fall out from the anesthesia...got to find the silver lining, right???

More IV fun...
 Anyway, all that to say, Herman III is now Herman IV! We are hoping and praying this helps resolve some of the rough GI issues I've been having the past couple of months, but we probably won't be able to tell for a few days and all the meds get out of my system and my GI tract wakes up from all the anesthesia. In the meantime, I'm getting used to Herman IV.

While I've now had a feeding tube for almost 2 years, I have a different type of tube than I've had the previous 3 tubes. Herman I was an NJ tube which went down my nose into my intestines. Herman II and III were PEG-J tubes that were a bumper style tube. This means that they were held in place with an interior bumper to keep the tube from falling out. I really liked having that style of tube because it felt really secure and I didn't really worry too much if I accidentally snagged it because I knew it was held in place.

Because Herman IV was placed as an emergency tube change, there wasn't time to make sure the type of tube I wanted was available. That means this time, I have what is known as a balloon style tube. Instead of a bumper on the inside, there is a balloon that is inflated with water that holds the tube in place. I'm not really sure what to expect with this type of tube. It makes me feel a bit nervous that it's not as secure, but I guess I just need to make sure I don't snag it on anything =P One thing I DO like is that this tube is much shorter than Herman III which has been nice because it doesn't hang down as far and get caught on things or get in the way. So I guess Herman IV is growing on me and I'll give =this balloon tube a chance. Not like I really have a choice at this point anyway... =P

Welcome Herman IV!!!
Next up is our trip to MN to see Dr. Afrin! We were hoping to be able to fly with an organization that provides free flights to patients needing out of state medical treatment or appointments. Unfortunately, there is a snow storm heading to MN this weekend...since the planes are private, small planes, they are not able to fly in bad weather. That means our flights had to be cancelled. =(

So we are road tripping yet again! Nick and I are heading out tonight to get a few hours in, then we'll finish the drive tomorrow. My appointment is on Friday, and we'll decide when we start the drive home depending on the weather conditions.

Thank you for your prayers for the tube change! I am glad that it is over, and we're on to the next part of this crazy week. We are looking forward to being able to talk with Dr. Afrin about these recent symptoms and see what his recommendations are for better management since what we're doing right now is clearly not working so well anymore. We are praying that my body tolerates the trip well, especially as the medications wear off. Once we get back, it will on to my next Xolair injection and the port placement. We're trying to take everything just one step at a time, even though sometimes it feels overwhelming. Thank you for being a part of this crazy life of ours through your prayers and encouragement! Stay tuned for more details about our trip, the appointment, and whatever else fun stuff I can come up with to share!

Sunday, December 11, 2016

Finishing the Year...Strong???

It's almost the end of the year, but instead of slowly easing into the holiday season, we're going in Boka-style. Full speed ahead! Basically, from now until the end of the year things are going to be quite busy for me (us) and I wanted to do a quick update and share some prayer requests for the next few weeks.

It's been a bit of a mixed up jumbled mess of mast cells and intestines and Xolair and veins and a horrible game of trying to figure out what is the chicken and what is the egg...basically, there's A LOT going on and we're not sure what is causing what. It's all likely related in some way, but it's hard to pull things apart and figure out what started first and what is the fall out.

Unfortunately, regardless of what came first, we've reached a point where we can no longer do nothing and hope that things turn around on their own...so we've been talking with my doctors to figure out what is the best course of action.

First up has been my Xolair. After 10 months of seeing incredible improvement from these injections, they apparently are no longer working...meaning I've lost pretty much all the progress I made while on the injections...in a matter of weeks....not cool, mast cells, not cool. Right now, we can't tell if the Xolair truly has stopped working or if something is causing the increase in symptoms and masking the improvement I had with the Xolair. Since my reactions to the actual injections do not appear to be significantly worse, we're continuing with my Xolair on the theory that if my recent flare has nothing to do with the Xolair, then stopping it could cause me to spiral downward even faster. I got my most recent injection this past week, and my final injection of 2016 will be the week before Christmas.

Next up is my GI tract. Oh yes, how well we get along...(insert sarcasm and reread that sentence if you missed it the first time through =P) For whatever reason my stomach and intestines have been crying mutiny for the past 6+ weeks. After first it was an annoyance, then it was critical when I had a particularly bad week, now it's something that cannot continue without me really suffering from dehydration, loss of nutrition, and lack of absorption. So we talked with my GI doctor, and we've decided to change out Herman. I've had this feeding tube since April and even though it still works and looks fine, we're going to see if changing it out will alleviate any of my symptoms. My doctor's working theory right now is that the J portion of my tube that extends into my intestines may have become dislodged. I have slightly unusual anatomy which means my tube has to be stitched into my intestinal wall to keep it in place or it will shift positions and flip around so my feeds run into the wrong part of my digestive tract. The x-rays show that my tube still appears to be in place, but if I have pulled the stitches at all (from all my vomiting and intestinal spasms) it could be irritating my intestines and causing this increase in symptoms. We don't know if this will solve these GI issues, but it's a place to start and really the only thing that can be done from a GI perspective. If it doesn't work, that points more toward a mast cell driven issue and we'll have to approach treating this from a different angle. So, all that to say, Herman III will become Herman IV very soon!

Photo from my last tube change in April!
A potentially related issue to my mutinous GI tract is the fact that I have stopped absorbing my medications. Both my pills and liquid medications are no longer working well, if at all. Part of the reason we have spent so much time going on "date nights" lately is because I can't get my reactions under control at home. (If you're new to this blog, date night used in this context does not refer to the socially accepted outing of going to dinner and a movie but a Bokatopia version of a date night which involves an ER trip so I can get meds and Nick can watch baseball or football =P) We can't really do much to address this absorption issue until we know whether this is related to my feeding tube or not. Once we have that information, we'll be better equipped to discuss what we may need to do to address how I can get my medications to work.

Also related to my medications not working, (I told you everything is all intertwined!!) when my at-home meds don't work, we're left chasing a snowballing reaction and often end up needing EpiPens and IV medications to get things under control. In addition to just being more reactive overall, these past few weeks have also brought some of my worst anaphylactic reactions yet...needing 2-3 doses of Epi before we can get things under control...not a fun place to be...

Part of the reason I've been needing more doses of Epi is because we can't get IV access fast enough for me to get the IV medications I need to stop/control the reaction. Epinephrine is life-saving, but it's only a temporary solution. It buys time to get the IV meds that will actually control the internal swelling and symptoms but doesn't necessarily end the reaction right there. For me, I know that once I use an EpiPen, the clock starts...if I'm not able to get IV medications quickly, I may have a rebound reaction and need more Epi to buy us more time. Because I've had so many IVs over the years (many of them within the past year or so), my arms have finally reach a point where the scar tissue and size of my veins is making it very difficult to get access...especially during anaphylaxis or episodes of dehydration when it's already more difficult to find a working vein. The reason I needed multiple doses of Epi during one of my reactions was because 2 EMTs and a doctor in the ambulance couldn't get a line started to get the IV meds I needed going. I had bruises up and down my arms from them trying multiple sites in hopes of finding a cooperative vein. They did finally get a line going and things finally calmed down, but it was a bit tense in the ambulance when my throat was closing and they're frantically giving me Epi to give us more time to find a vein.

Yet another infiltrated IV...
Obviously more than just not being comfortable, it's also getting to the point where it is dangerous for them to not be able to start a line. My arms are shot, and we don't want me to lose the little access I do have left so in an emergent situation there is still a chance to find a working vein. But in the meantime that means we need another option. After a lot of consideration and talking with my doctor, we decided that the best option right now is for me to get a central line. I will be getting a type of central line called a Port-a-Cath (aka port) surgically placed in my chest just below my collarbone with a catheter that will extend through a vein over to my heart. It can be accessed with a needle and provide us with a route to administer medications and fluids without me needing a peripheral IV. This will happen just after my last Xolair injection.

In the middle of all this craziness, Nick and I are headed to see Dr. Afrin! Two days after my tube change Nick and I will be flying (hopefully) to MN for my appointment. We are so thankful for an incredible church family who have helped us find a place to stay for the 2 nights we will be in MN. Two days after we get home from MN, I will be getting my last Xolair injection for 2016 (I CANNOT believe it has been 11 months since I started these injections?!?!). The port placement is scheduled for the day after Xolair, and 4 days after that we will be driving to VA to spend some time with my family.

Can you say whirlwind???

This would all be a lot to deal with even if I wasn't sick...but I am...and right now this is my reality. No, this is not at all where I ever wanted to be. But please don't mistake discouragement for despair. Yes, I'm discouraged that I'm faced with more intensive treatments just to maintain some semblance of control over my mast cell disease...but that DOESN'T mean that I'm allowing this to completely overwhelm my life. I may not have control over my body or mast cells, but I DO have control over my attitude and my perspective.


We are still genuinely smiling. We are still laughing. We are still choosing joy. God is always good and because of THAT, life is still good...even when it's hard.

Wednesday, December 7, 2016

Feeling Blindsided

I know no one expects to be diagnosed with a chronic illness, but I think all the fall out from my mast cell disease is more what has caught me off guard. Maybe some people see these things coming, but for whatever reason I feel blindsided.

It's not that I don't have friends in the very predicament that I now find myself in. It's not that I didn't know it was a possibility. It's not that I tried to convince myself that things were still sunshine and rainbows. It's just that I never expected it to happen to me.

We all get conditioned to wherever we are in life. If you're doing something every day, you just get used to it. Doesn't necessarily mean things get any easier, but it becomes familiar. For me and my family, our perspective has changed thanks to my mast cell disease. Symptoms that used to be worrisome are now just everyday life.

Nick jokingly reminds me not to break "Rule Number 1" before he leaves knowing that despite all our best efforts, I still might pass out but at least joking about it makes it a little less of our reality. Sleeping on the floor outside the bathroom has become routine with both Nick and I having our "hallway beds" ready to go should my GI tract cry mutiny yet again. I spend my days trusting in my crazy, fluffy poodle because I know she is often more in tune with my body than I am able to be. I'm on a first name basis with not only my doctor and his staff, but also the pharmacists, ER staff, and my insurance company. Is any of this normal? To us it is.


And that's why, when things all of a sudden "get bad" I still feel caught off guard.

As things has gotten significantly worse over the past 4-6 weeks, we've been desperately trying to sort things out and do something to stop this rapid progression of symptoms. I'm calling doctors I haven't seen in a while and trying to schedule with new ones. Even as bad as things are, I still don't feel like things are urgent. The staff when I call ask if I need an emergency appointment and I have to remind myself that "yes, I actually do." And that it's okay.


I don't see myself as one of the more severe mast cell patients. But when I talk with doctors, that's the category I get placed in...and it feels weird. It's a kind of twilight zone feeling where I know what my daily symptoms are but to me they are normal. When I take a step back and consider my current situation, though, I have to agree that maybe I am. Don't get me wrong, there are many who are so so so much sicker than I am, but if I'm truly honest with myself (which is incredibly difficult!!) I'm not doing so hot right now...

I'm primarily feeding tube dependent for my nutrition, even more so in the past month...The solid food that was slowly working back into my diet over the past 10 months has become a memory yet again with the most solid food I've had in almost a month being drippy eggs that I threw up hours later...I'm going on 20 EpiPens so far this year...and I was thinking the 16 I used in 2015 was a lot...I've seen more of the inside of the local ERs than the school that I am supposedly still enrolled in...I'm more familiar with which of my doctors are getting a new dog or bird than which of my friends have new babies...

And the hardest part of all this? The WHY? Not the "Why are you letting this happen, God?" Despite how tough things are right now, I do trust that God loves me, is in control even over my crazy mast cells, and that I can still fit into His purpose no matter my physical health. I might forget that here and there, but I DO believe that. The hard WHY is why all this is coming back.

Why has my Xolair all of a sudden stopped working? Why is my GI tract almost worse than it was a year ago? Why am I losing all the progress I made over the past 10 months? Why are my meds that have kept me stable for so long not working any more? Why do I have to give up so much to this disease????

When I said above that I trust God, I mean that. But that doesn't mean that my relationship with Him is always sunshine and rainbows. If I'm completely honest, right now it's quiet. I want to pray, but the words just don't come. I cry to Him in the toughest moments for Him to take the pain and to give some relief, to help me breathe when my throat is closing, to keep me calm when another round of anaphylaxis hits, but in the day to day downward spiral I find myself in, my thoughts become jumbled, my words are lacking, and I sit with my Bible closed in my lap crying.

I'm not mad at God. I know I couldn't hold onto joy without Him. I wouldn't be where I am today without Him. But sometimes when life is so so heavy, I just feel like I can't even look up. Living in northeast Ohio, I know the feeling of months on end with heavy, cloudy skies but still knowing the sun is up there shining away even if we can't see or feel like. Right now, life feels like that. I know God is still shining on me and wrapping me in His arms, but all I can see and feel is the heavy weight of grayness.

But despite FEELING that way, that's not what I'm holding on to. Nick and I try to read the Bible and pray together every evening. We're not perfect, but it is a special time that we have together even if sometimes it's spent on the floor outside the bathroom or in the ER. Lately Nick has been doing most of the praying. He encouraged me to start praying some as well, and I said right now the words just won't come. He reminded me that God doesn't care about having the "right" words or everything all in order. He just wants me to come to Him however broken I might feel in that moment. I was reminded that how I FEEL is not what is necessarily true. God never changes, He loves me where I am, and I can ALWAYS come to Him for grace and mercy. THAT is what is true. THAT is what I'm trying to hold onto when everything else feels so shaky around me.


The next few weeks are bringing more appointments, another round of Xolair, feeding tube change, travel to MN to see Dr. Afrin, and scheduling an outpatient

surgery. I'm glad these weeks will be busy because we can't keep doing nothing new with how rough things have been. But at the same time, I'm nervous. Some of the treatment options we are discussing are not things I ever wanted/expected to be considering. The severe mast cell patients fall into some of these categories...that was never supposed to be me...yet here I am...

But just like any part of life, we keep going! I'm mean, really, what other option do we have??? Some days I may not make it out of bed, I may not leave the house for a week other than to go to the ER, I may be unable to eat anything and try to keep down whatever liquids my body will tolerate, but I'm not giving up. Ain't no mast cells gonna stop me!!! So I'm going to hold onto joy, find reasons to smile every day, and keeping trust that God is in control and loves me exponentially more than my mast cells hate me.

Despite that fact that my unpredictable, mast cell disease doesn't seem to be fitting into my expectations of how chronic illness *should* look, God never fails to measure up to what He promised He would. And that is my Rock to hold onto during this season of feeling blindsided and out of control.

Tuesday, November 22, 2016

How Quickly Things Can Change

I've started this post probably half a dozen times before just giving up on writing it...It's definitely not for lack of trying that I haven't posted a blog recently. It's more that there are so many thoughts whirling around in my head and I just can't seem to put them onto paper (or screen =P).

I haven't just been struggling to write, I've been struggling to function.

I've started and stopped writing this post so many times. Even as I'm finally getting words down here, I still feel like I can't put into words how things have been going these past few weeks.

This year has been beyond a gift after the way it started. In case you don't remember, I started off 2016 with a week long hospital admission due to a mast cell reaction that we couldn't get under control at home. I had just chosen VICTORY as my OneWord for 2016, but found myself fighting a losing battle to my mast cells not even a full week into the year.

I remember wondering what this year was going to look at when we were faced with uncontrolled mast cells and few answers. I was physically and mentally exhausted and we didn't really have any direction to go. I was desperate to believe that things could improve, but really didn't have much indication that they would. And yet...a month later, we finally got insurance approval for my Xolair injections which have turned out to be one of the most effective treatments we have tried so far for my mast cell disease.

How quickly things can change...

I am so thankful for the blessing this year has been so far! After the rough start, I never expected to see things improve as much as they have this year. I've been able to eat solid food. I've been able to slowly work back to running again. I had my longest run without an EpiPen in almost 2 years. We traveled to Minnesota, Wisconsin, Texas, Florida, and California along with visits to my family in Virginia. And even beyond all the traveling, Nick and I were able to build some semblance of "normal" where our lives were not revolving around ER trips, doctors, and trying to manage uncontrolled symptoms. I was so excited going into this holiday season to be able to to actually EAT Thanksgiving dinner with my family for the first time in 3 years.

And yet we are again reminded how quickly things can change...

This blog post has been a long time in coming because these past few weeks I have been desperately holding on to the "health" that has grown over the course of the past 10 months. Instead of being able to function the way I have been since starting the Xolair, we're seeing symptoms reappear that have been gone for months and are struggling to manage my daily symptoms that used to be easily managed with my emergency medications.

How do I put into words the feeling of losing things I've already lost once, AGAIN?

It was one thing to lose the ability to eat solid food once. But to regain it this year only to lose it again a few months later...somehow it feels so much more difficult...And running...I fought so hard to be able to run again! To put one foot in front of the other without having to think about every individual movement. I worked. so. hard. And now I'm back to being almost unable to stand for any period of time without practically collapsing or passing out. How do I even begin to describe what it feels like as I look at how far I have come this year and to be watching, seemingly in slow motion, all the progress coming crashing down around me??

Don't get me wrong. I am SO THANKFUL for the health I have had this year. It has been an incredible gift that we had no idea was coming at the beginning of this year. And I mean it when I say that if this gift was for these past 10 months and that's it, then we are thankful to have had this time of blessing. But that doesn't mean that I don't sit and cry in pain and fear and exhaustion as I watch what I slowly regained over the course of the year slip away...again...

I just got home from being admitted for 4 days. We tried so hard to manage things at home, but with 4 ER trips in less than 2 weeks, we knew that we were fighting a losing battle. All of a sudden, this year feels like this year is ending almost how it began...Uncontrolled symptoms, few answers, no direction...

Managing mast cell disease is a game of chance when things are good. But when things go wrong, it feels like a ticking time bomb of trying to catch up to snowballing symptoms before things crash hard. The majority of this year was such a stark contrast from last year...I went from losing the ability to walk to running again, I began to tolerate solid food after almost 2 years of soft foods and liquids, I saw improvements in my health that I wasn't sure I could even hope for. Yet this holiday season feels so similar to where I was last year facing progressing symptoms, few answers, and desperate for relief...

I love Thanksgiving. I want to enjoy this holiday season with family and be thankful for the year I have had. But somehow it feels so much tougher when I'm dealing with symptoms that feel like all the progress I've made is crumbling around me. I was so looking forward to being able to actually eat Thanksgiving dinner for the first time in 3 years...Now I feel like I'm facing not only NOT being able to eat anything solid again this year, but also struggling to keep the worry of whether things are getting out of control AGAIN at bay...

This time last year, I was dealing with many of the same feelings of discouragement, frustration, helplessness, exhaustion, and more along with all these familiar physical symptoms...but I didn't have a whole year of "health" to be thankful for. A year ago, I had no idea how good a year was possible...now I do, and I think that is what makes this that much more difficult. I am so so thankful for the gift and blessing this year has been, but at the same time, it makes this recurrence of symptoms so. much. harder.


I've started and stopped this post so many times because every time I try to write, the "what ifs" and questions and fears begin to swirl around in my head again. I don't want to be back where I was a year ago. I still have so so much to be thankful for...I don't want to forget that now. But when the physical symptoms become so relentless I don't get a break, I'm stuck alone with my thoughts (again)...and it can be hard to forget how quickly things can change...

Thursday, November 10, 2016

Leni the Awareness Ambassador!

Leni is taking her service dog talent on the road!

We met a friend at Bible study a few weeks back who is a preschool teacher. She told me her classes were doing a week on working dogs and already had a therapy dog and police dog lined up to visit her classroom. She asked if Leni and I would be willing to come and talk about service dogs. Obviously we said YES or there would be no reason for me to blog!

Leni and I had so much fun! We got to spend about half an hour with each class and talk a little bit about what it means to be a service dog and what Leni does for me. I showed them what Leni carries in her packs and how I use the pull cord for balance when I need it. Leni demonstrated some of her tasks for the kids, such as "find my phone" and "get my EpiPen."

We showed them how she focuses on me even when it's loud and crazy and ways we can move through crowded areas without taking up tons of space. We go to show how she tucks under my legs if I'm sitting or between my legs in we're waiting in line. She also showed how she will lie across my lap if I'm sitting on the floor or put her front paws and weight on my legs if I'm in a chair to help increase blood flow and feeling in my legs when they don't want to work right.

Then, of course, we did some of her fun tricks! Leni showed them how she can bow and "sit pretty." She also weaved through my legs and was overall just so stinking cute!

At the end of our 30 minutes, all the kids got to come up and pet her. One of the boys in the second class was so so sweet with her. He was gently petting her on the head and whispering quietly to her talking about how she was such a good dog and he wished his dog was as good and that she need to keep taking care of me. It was so cute!

Thank you so much to our friend, Lisa Faluotico, for inviting us to come and spend some time with her classes! This was the first time Leni and I have been invited to talk in a classroom about service dogs, and we had a great time. It was fun for both Leni and me and the kids (at least judging from the smiles on their faces!), plus it was a great chance to raise some awareness for service dogs.


I know, you're probably thinking, they're 5 years old...how does that count for raising awareness?? Well, let me ask you, how many 5 year olds do you know that ever. stop. talking?? All the kids likely went home and told their parents and sibling about the cool dogs they met this week. Even if they don't remember the specific details, they now know what service dogs are. Plus, these 32 kids learned  not to rush up and pet a working dog they might see in a grocery store or restaurant.

They might only be 5 years old right now, but eventually they'll grow up (sorry, parents, it's true!). There are some childhood memories that just stick with us. I remember the ONE time our basset hound came to church wearing a t-shirt for a specific children's church skit. I barely remember much else about that church building or what was done in children's church, but I do remember that. It's not often dogs come to school, so these are memories that may stick with these kids. Maybe when they're in middle or high school, a classmate will have a service dog and all of a sudden, they'll remember learning about Leni back when they were in preschool.

I've said many times that we don't always get to choose what happens to us, but we do get to choose how we respond. I certainly didn't choose to have mast cell disease, but I do get to decide how I'm going to live with it. Mast cell disease is one of almost 7000 rare diseases of which 95% (including mast cell disease) have no FDA approved treatment or cure. Without research, there's nothing that can change that. And just like everything else in this world, research is driven by funding. As a rare disease, it is that much more difficult to get funding because so few people are impacted by these conditions and not many more even know about them.

There's no chance of treatments or cures being developed without research, no research without funding, and no funding without awareness. Obviously I'm not able to be in the lab doing the research, and unfortunately I'm not independently wealthy...but I do have a voice. And that's how I'm choosing to live with mast cell disease. I could be upset that my life isn't going as planned or get stuck mourning the life I had, but that accomplishes nothing. Instead, I'm choosing to use the platform I've been given to speak up. For me and thousands of others living with mast cell disease so that we can continue to hope that one day a treatment or cure will be found. For the thousands of kids and adults who will hopefully not have to wait 8 years for a diagnosis being told along the way they are making everything up. For the families who have to watch helplessly as we suffer with symptoms and there is nothing they can do. I might not be able to do a lot, but I can speak out.

And that's one of the reasons I enjoy even what seem like small things, like sharing about service dogs with a preschool class. Maybe one of those kids will grow up to cure mast cell disease...or another rare disease...Maybe one will become a doctor who recognizes the potential of a service dog for a patient...or maybe these kids will just grow up realizing that having a service dog or disability doesn't make a person weird or someone to be avoided...And if that's the case, that's enough.

So, like I said, Leni's going on tour! We're sharing our story through fluffy poodle snuggles, ear licks, and altogether cuteness along with educating about what service dogs can do and what life is like with mast cell disease. Let me know if you would like us to come and share about service dogs or mast cell disease and be another stop on our awareness tour!

Monday, November 7, 2016

More Appointments...My Favorite!

I was looking over my past few posts, and it actually looks like I haven't had any doctor's appointments lately. Well, if you were thinking that, unfortunately, you'd be mistaken =P In case you weren't aware, I spend about an hour (sometimes more) at my allergist's office every other week. This is so I can get my Xolair injections. I usually see my doctor for at least a few minutes, but most of my time is spent with the nurses who give the injections. Even still, this still feels like I see my doctor and nurses WAY too often. Add onto that, actual appointments where I get to sit down and spend time discussing test results, scheduling new tests, discussing concerns, tweaking medications, etc. PLUS going for blood work, doing said testing, and whatever else needs done...sometimes it just feels like I never escape!

Smiles on our way to yet another doctor!
This past Monday was one of those sit-down appointments with my allergist where I was able to talk with my doctor for more than a few minutes. We had a good bit of stuff to chat about, so I had been waiting for this appointment for a couple of weeks. He also decided to do some breathing tests, so I had to do that before my appointment, and it was a Xolair day so on top of that, the nurse was in and out of my appointment giving me my injection. It was a busy morning!

Nothing much is changing on the allergy front right now. We may be adding another mast cell stabilizer to see if that helps as my GI issues have been a bit worse in the past month than they have been since starting the Xolair in February. The only challenge is that it is not readily available in the USA, so it either has to be ordered from Canada or compounded...so I have some work to do to figure this out...most of the other issues we talked about, we need to wait until I hear back from another couple of doctors before we make any final decisions, so stay tuned for that!

We also discussed some of the increased reactivity that I've been having on Xolair days. His current working theory is that when I am sitting in the waiting area with the other patients, I may be getting triggered without knowing it since my sense of smell is pretty much non-existent. Even though he is an allergist, his office is primarily a respiratory office and a number of their patients wear copious amounts of perfume and/or are smokers...basically the setting of a perfect storm for a mast cell patient. Because I pre-treat with benadryl before getting Xolair, that is likely to mask/postpone any potential reaction that then re-appears 4-6 hours later...SO, to try to avoid these possible exposures, he is going to have me skip the waiting area and wait in one of the empty treatment rooms or the shot room to hopefully avoid coming into contact with any potentially triggering fellow patients.

My second appointment for the week was with the Center for Functional Medicine at the Cleveland Clinic that I went to for the first time in August. This has proven to be much more beneficial than I had anticipated when I first started seeing this doctor. As a functional medicine doctor, he is still a board certified legit doctor, however, his focus is on trying to determine the root cause for chronic issues to treat the source instead of just treating symptoms. He takes a more holistic view and is able to take my records from all my various doctors and hopefully come up with an effective plan treating everything as connected rather than as independent issues. He did say I was his first mast cell patient the last time I saw him, but since August he has begun reading Dr. Afrin's book (Never Bet Against Occam)! He says that while he wouldn't call himself a mast cell expert, he is feeling more equipped to help other patients that may come in with a similar presentation to my symptom patterns. Yay for awareness!

So what did we accomplish? After my appointment in August, we had done a TON of blood work and a few things came back abnormal. Since then, I've redone some of the lab tests and they were still abnormal...so we've been waiting for this appointment to go over some of that and make some decisions about what needs treated and what isn't urgent.

The main thing we discussed was my adrenal function. I've been seeing my endocrinologist for almost a year now and have had borderline low adrenal markers pretty much since we started testing. We have been holding off treating because we were hoping that the adrenal function was/is related to my mast cell reactivity and as we got my mast cells more stable, my adrenal issues would resolve. Unfortunately, after the testing in August, a few other markers of adrenal function also came back quite low, not just borderline, but actually problematic low. Paired with some of my increasing symptoms that are likely endocrine related, it appears that we have run out of time for my mast cells to stop impacting my adrenals. Yay...

At least since he is at least mast cell literate now, he understand how tricky it can be to add new medications (or anything really) into my body. Because of that, we decided to compound an unusual formulation of one needed medication in the hopes that it will reduce the risk of triggering my mast cells. I can't say I'm thrilled to be having to add another medication (especially since we're already looking into another mast cell stabilizer from my Monday appointment), but unfortunately that's just life with mast cell disease sometimes...or any chronic illness probably.

SIDE NOTE: If you also need to compound any of your medications, talk to your insurance company. I recently found out that as long as the prescribed medication is covered, the compounded form is also covered. It's a slightly higher co-pay than if I were going to a standard pharmacy, but still don't have to pay 100%. The medication we are compounding for my adrenal insufficiency is $85 for a 1 month supply (which technically would last longer since I'm starting on a lower than normal dose). Since my insurance is covering it, I have a $20 co-pay. I had NO IDEA that compounded medications were ever covered by insurance, so it's definitely worth talking to your insurance if you're in a similar boat.

Back to the appointment. As I mentioned, the focus of my functional medicine doctor is not only to treat urgent issues, but also to see if we can figure out the root cause and address that, so we're not just trying to manage symptoms but actually doing what we can to fix what is actually wrong. He said that based on his experience, there are typically 5 major causes for the onset of odd issues like I am having: genetic mutation, virus/illness, major emotional/physical/mental stress, environment, brain injury. Obviously things don't always fall into one of these 5 categories, but he has found that MOST times, the answer lies somewhere in there. We have been able to rule out 3 of the 5 for me, and are left with a possible genetic mutation and/or brain injury.

Testing for genetic mutations is a difficult process and not done without specialists involved. That is still on the table for future discussion should we need it, but for now, we have been focusing on brain injury being my potential trigger for setting everything in motion. I have had 6 concussions...my first was from a kick to the head from my horse in high school. At the time we didn't even really know it was a concussion, but based on my symptoms, it is probable that this was my first. During my 3 years in college (graduated a year early), I played soccer and swam. I also ended up with 4 more concussions...most were related to soccer, but one was due to my accident prone-ness and an unfortunate meeting of my head and a cinder block wall in my dorm room...The last concussion was only 1-2 years ago and was the result of my head and a wall meeting yet again...this time as a result of me passing out near a door frame. While there could still be some genetic issues involved, we agreed as we were discussing my history that that long-term post-concussion syndrome (which is a form of traumatic brain injury) could very well have been a major trigger for my symptom onset, especially since the timing fits.

There are certain types of brain injuries that cannot be recovered from. However, there are also a lot of new ways to re-train the brain and re-create signaling pathways that may have been damaged. There is something called the HPA axis in the body which is the neuroendocrine connection between the Hypothalamus, Pituitary, and Adrenals. The hypothalamus and pituitary are located in the brain and the adrenals are located just on top of the kidneys. This axis is responsible for a HUGE portion of what are supposed to be automatic functions in the body, such as endocrine function including hormone production and blood sugar control, water conservation, immune responses, digestion, energy storage and utilization, and stress response. Brain injuries, including concussions, can alter pathways in the brain and impact this axis and communication between these 3 neuroendocrine glands.

Based on my symptom patterns and progression, it seems likely that there may be a connection between my concussions, this HPA axis, and my ongoing health issues. My doctor feels that I may be a good candidate for seeing a functional neurologist who specializes in working with varying degrees of post-concussion syndrome and working on re-mapping pathways in the brain that may have been damaged.

Now, don't misunderstand, the purpose of this is not to "cure" me. Regardless of whether my concussions were the underlying trigger for what is going on in my body, there are somethings that we still don't really know how to address. HOWEVER, the hope is that if there are pieces of this crazy puzzle of my symptoms that are connected to post-concussion syndrome and associated issues with my HPA axis, then by working on brain re-training, those issues can be resolved and/or minimized. This will give us a better picture of what is truly mast cell driven and what is background noise. I'll still be living with and managing my mast cell disease (unless a cure is found sometime soon?!?!), but this might be able to make even that a bit easier.

So that's where we are at! I will keep you posted as we pursue this option and as we (continue to) attempt to get my crazy mast cells under control. As always, THANK YOU for all your prayers and support and encouragement. The messages, instagram comments, texts, emails, etc. never fail to make me smile (and sometimes cry) because I am reminded that I am never alone in this. Not only is God always with me, but I have an incredible network of family and friends and fellow mast cell warriors behind me and lifting me up in prayer. I've said it before, but it's always true so I'll say it again...It is so humbling to literally depend on so many prayers to just get through some days. On days that I'm so sick or discouraged that I can't pray anything but "please, God" I know that I am being held in His hands.

Leni snuggles are *almost* as good as your prayers =)
Please be praying as we are making some decisions regarding treatment both with the functional neurologist and day-to-day symptom management. Please pray for some relief from these ongoing GI issues that seem to be wanting to reappear after months of being relatively quiet. Please pray that my life can be a light to the doctors and nurses that I see so frequently, that I can hold onto joy that will point back to God and be a testimony of His faithfulness and love. Please pray for my family as they are walking this road with me, and I'm sure at times feel helpless as they watch me struggling with symptoms and there is nothing they can do. Pray that Nick and I will continue to be able to choose joy and smile every day!

Thursday, November 3, 2016

How Can God Use ME?

I'm sure we've all asked ourselves this question more than once. As Christians, we want to know that our lives are making a difference for eternity, and we are doing more than just going through the motions of life on this earth. I know that I have asked myself this question many times.

One time in particular jumps out at me.

It was the summer after I graduated from college. All throughout college, I had been a part of FCA (Fellowship of Christian Athletes). I had been on our leadership team at college for two years, volunteered with a local high school huddle, served on weekend retreats, and been a huddle leader (aka counselor) at sports camps over the summers.

This summer was different than previous summers, not just because it was my last year as a huddle leader. By this point, my health was beginning to significantly impact my life. It would only be a few months until my first diagnosis that would continue to define the next years of my life. This week of being a huddle leader for the soccer players pushed my body to the limit. I was supposed to be the leader and a role model for the girls in my huddle. I was supposed to be someone they looked up to and there for them during a busy and stressful, but fun, week of FCA camp.

Sharing with the campers before sports practice
I WASN'T supposed to pass out on the soccer field from heat exhaustion despite drinking my weight in fluids. I WASN'T supposed to have to check in with the nurses before every practice to be cleared to be on the fields during the day. I WASN'T supposed to be confined to the air conditioned dorms or meeting areas during practice times because my body would not cool down.

I remember going back to my air conditioned room (with supervision because I was so feverish they were worried) one day when I had been pulled off the soccer field for heat exhaustion and crying. I felt like this was the first time I actually felt like something I loved was slipping through my hands because of my health. I wondered what I was supposed to do when my body was letting me down. I was there to SERVE! This week wasn't supposed to be about me! So why was it that when I was trying so hard to be able to serve that I couldn't? To say I was frustrated would have been a serious understatement.

Then one of the adult leaders (I know, technically I was over 18, but these were REAL adults =P) pulled out her Bible and shared a verse with me that I truly took to heart that week and have prayed over my life since. In Corinthians 12:8-10, Paul says, "Three times I pleaded with the Lord about this, that it should leave me. But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."

The only thing I'm not sure I follow is that first sentence...he only asked THREE TIMES for God to take his pain??? Pretty sure I've asked a *few* more than 3 times...but I supposed that's why Paul has almost the whole New Testament to his name and I have this blog... =P

Jokes aside, though, this verse has carried through many, many tough seasons of life. That doesn't mean I never cry for God to take pain or suffering away, but it means that even in the midst of it, when I know I can't possibly go it alone, I turn to God knowing He is my strength in those moments of complete desperation and inability. A few years later, I served at another FCA event, and was able to share how this verse keeps me going...how I knew that despite my diagnoses and health challenges and my lack of physical strength, I was still able to serve at FCA retreats because God gave me His strength so I could be a testimony of what He can do in my weakness.

Fast forward a few years, and the lack of strength I had then I would be thrilled with now. As I am daily faced with my reality of currently being disabled by my mast cell disease and unable to work or function on a "normal" level, seeing God be my physical strength has faded into memories. One by one, I have watched things I love (school, work, sports, serving, FCA) slowly slip through my hands as I stand there asking God why He isn't being my strength anymore. The verses I once clung to as my lifeline seemed to have run their course. Paul still had strength to travel all over the world sharing the Gospel despite his weaknesses...why can't I even get out of bed some days? Why do I miss more Bible studies than I make? Why are my symptoms such that I cannot be the friend that is always there to help?

Despite feeling as though my physical strength was only a memory, I realized that my spiritual strength and depth of my faith had grown through these seasons of feeling like I was running on borrowed strength. I was encouraged by that, but still didn't understand. I am thrilled to be growing spiritually, but at the same time, it feels lacking. What good is a strong faith if it cannot be used? The strongest faith in the world doesn't matter if God can't use it for His glory. I wasn't purposefully hiding my faith, but when I go days barely leaving my bedroom, it certainly feels like a light placed under a bed that can only illuminate a small space that no one can see. I was thankful to be growing in my faith, but discouraged that I only felt my physical limitations even more.

But wait for it...here's the bit aha moment! It's a good thing this post doesn't have to end there...

We are studying Judges this semester in the women's Bible study at church. I love going through books of the Bible section by section, but sometimes the Old Testament can be a *bit* confusing and overwhelming. Judges is no different. But even in the few short weeks we've been doing this study, there is so much practical application. For me, one thing in particular has jumped out.

Judges 3:12-30 recounts the story of Ehud, one of the judges God raised up to lead Israel out of captivity. I won't write it all out here, but I want to share one specific verse: Judges 3:15. "Then the people of Israel cried out to the Lord, and the Lord raised up for them a deliverer, Ehud, the son of Gera, the Benjaminite, a left-handed man."

WOW!

What? You didn't catch it? Don't worry, I didn't either at first. I'll give you a hint, it's the last 2-3 words (not sure if a hyphenated word counts as one or two...English majors, a little help??). ANYWAY, "left-handed man" is the phrase I'm referring to. Still confused? Don't worry, I was, too!

Left-handed in the Old Testament was not a reference to his writing preference. The translation actually indicates that Ehud was paralyzed or otherwise unable to use his right hand (hence, forced to be left-handed). THAT is what jumped out at me.

We are told and can read throughout the Bible how God uses unlikely people to be influential leaders. David was a murderer, Moses was also a murderer and gave excuses, Daniel was a foreigner/captive, Gideon doubted, Mary was a teenager, Paul (formerly Saul) was one of the biggest Christian killers of his time...seeing a pattern? To use a cliche church phrase, "God doesn't call the equipped, He equips the called." In every situation, God chooses someone no one else would have chosen and uses them in the ways that we read about today. Using an unlikely leader is not an unusual theme in the Bible, but Ehud still jumped out at me.

He is the first time a disabled person is mentioned in the Bible where he is not only NOT healed, but used despite his limitations...and actually even BECAUSE of those limitations. We get no context as to when he lost the use of his arm. It could have been from birth, it could have happened from a battle injury, he could have gotten sick, we don't know. What we do know is that at the time he was called by God as a judge, he was still disabled. How many people in Israel do you think questioned God's choice on this one? I'm sure they are all looking around at the healthy, strong men and thinking that surely God could have chosen someone else.

But He didn't. God chose Ehud. And He chose Ehud BECAUSE of his disability.

Ehud was sent to the Moabite king. He told the king he had a secret message for him which meant the king dismissed all his attendants. Since Ehud was left-handed, his sword was concealed on his right leg, opposite of what would have been expected in that time. That meant he was able to surprise the king with his "message from God" and kill him quietly and suddenly. No one "normal" or "healthy" could have done this. Only Ehud. Ehud lived his entire life (or however long) with his paralyzed arm leading up to the moment God needed that disability to free Israel from Moab and lead His people into 80 years of peace.

This section of scripture came up at just the right time. I was just feeling (again) the disappointment of the unpredictability of my symptoms and as though I was just living life with no specific purpose. This was an incredibly well-timed reminder (#Godstimingisalwaysperfect) that despite my disabilities right now, God still can, will, and does use me. And sometimes it is BECAUSE of my limitations rather than despite it.

I may not always see the physical strength that I once did, but that doesn't mean that I can't have purpose where I am or that God can't use me with the life I have to offer.

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!