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.