Am I A Leaker or A Shocker?

During one of my
"shocker" flares.

 When you're diagnosed with this disease they educate you on the important things. Rescue medications, how and when to use the epi pen, when to call 911, when to go to the ER, what medications and foods to avoid, what can possibly trigger a reaction, list can go on and on and on. They prepare you for the big stuff, the life threatening stuff, what they don't prepare you for is the other stuff. Yes, MCAS is a blood disorder which means it will affect every inch and every organ inside you. I've been doing better the last few days. My anaphylactic reactions have decreased significantly. And I am so happy about that. But now all of my symptoms are leaking symptoms. I'm not sure which ones I hate more.

There are those that are shockers:
These people are those that have minimal day to day symptoms. Their reactions are almost always anaphylactic in nature. Their reactions come fast and hard. They majorly affect respiratory and cardiovascular organs. They usually need epi and a trip to the ER all the time.

Stuck in bed because
moving makes me
nauseous. 

There are those that are leakers:
These are the people with delayed reactions. And/or 24/7 symptoms. Their symptoms aren't easily fixed with benadryl and a shot of epinephrine. It's hours of plaguing symptoms with minimal relief. You can try the benadryl, the heating and ice packs, tylenol, and epson salts but they will likely give minimum to no relief.

Then there's me: 
I am both a leaker and a shocker. As you've seen in the past weeks I have flares of being a shocker. Where epinephrine is my life line that I depend on almost as much as I depend on my Jesus. Flares where the fire department is called to your limp almost lifeless body more than once a week and they know you by name and know your disease and emergency protocols by heart. (Thanks guys, Those cookies I  keep promising are coming your way as soon as I am able to.) Those are the scary weeks. Then my shocker flare fades and I go back to being a leaker. I think leaking symptoms take more of an emotional toll than shocker symptoms do. One of my leaking symptoms is bone pain and all over achyness. My pain and stifness will be so bad that walking to the bathroom or kitchen will leave me in tears. The general malaise feeling is overwhelming. There's so much I want to accomplish in a day but I just can't muster up any energy. And when I do have energy it only lasts for a few minutes and then *poof* it's gone. The fatigue is unbearable. I can get 8-10 hours of solid uninterrupted sleep and still almost fall asleep while standing up. But getting 8-10 hours is difficult because the pain and muscle twinges keep me up tossing and turning until I can find a comfortable position.

 Last night I  woke up around 2am with the worst chest pain I have ever had in my entire life (and that's saying a lot considering the chest pain I get after IV epi). Any time I took a deep breath in my body would literally scream and wish it were dead because my chest pain was so sharp and crushing. I had to resort to shallow breaths trying to calm the pain. And then it got worse. My pain started to move. Now not only was I experiencing the worst chest pain in my entire life but there was no excruciating pain in my right shoulder and lower back. I didn't think this was possible but the pain in my shoulder and back started pulsating with my heart beat. It's hard to explain but every time my heart would beat my pain would be worse. It was the worst most intense pains I think I've ever had. I can only take Tylenol and I didn't have any here. And with this pain I was in no condition to go and try to find some. I had no idea what was causing everything so I said "screw it" and took 50 mg of Benadryl and 20 mg of famotidine hoping that if this was cause of a reaction these to h1 h2 blockers would at least dull the pain. And I also took a Gas-X because I don't know it seemed like a good idea. I don't know what helped but after about 30 minutes of lying in bed trying to choke back tears because breathing was to excruciating the pain finally dulled to a dull roar. I was able to fall asleep. I still don't know what happened but I'm guessing it was just a leaking reaction.

They don't tell you about the leaking reactions when you're diagnosed. Mostly because doctors just aren't educated enough to know there's a difference between a leaker and a shocker. And that you can be one, the other, or both. I'm hoping my leaking reactions will start to subside like my anaphylactic reactions did so I can go back to a normalish life. Right now I feel like a slug who is stuck inside. And inside in just not a fun place. Are you a leaker or a shocker? Let me know in the comments below!
"For God so loved the world that He sent his only begotten Son, that who ever believes in Him shall not perish, but have eternal life." -John 3:16

With Love,
Elizabeth <3

For more information on being a "leaker" versus "shocker" click here.

The Pumpkin Spice Hunger Games

     It's officially fall! Don't you just love it? The air gets crisper, the leaves start changing, days get shorter, and literally nothing is left untouched from the pumpkin spice fairy. I love fall, in fact it's my favorite season of them all. But that pumpkin spice fairy... she's a terrible terrible thing. I am extremely allergic to cinnamon. It was one of my first allergies. It's a hard spice to steer clear of normally but this time of year... it's everywhere. Trying to survive from September 1st- January 31st is like a full on Hunger Games except I'm the only player. It's great. Here's how to survive!
Know Your Opponent
      Well, I know mine is cinnamon. Originally, I would only react to cinnamon if I ingested it. Touching it and smelling it didn't bother me, I would only react if I ate something that had it in it. Cross contamination was fine at the beginning also. Now, I react to cinnamon in all forms. Ingesting it is still deadly for me, cross contamination has proven to be iffy so I avoid it as much as I possibly can, and the smell of cinnamon triggers an almost immediate migraine. Often times "pumpkin spice" is a mixture of some artificial pumpkin flavor or scent and cinnamon. Which means anything pumpkin spice is automatically the enemy and therefor must die.
Know Your Opponent's Hiding Spots 
     Pumpkin spice has gotten really crafty at hiding over the last few years. But I'm good at hide and seek and I've started to figure out where it likes to lurk. One example of it's crafty concealment was the other day I was out shopping. I felt fine and was just minding my own business. All of a sudden I caught a waft. So I walked away from where I was standing but the smell of cinnamon got stronger. I was near the bread so I moved to the produce section to wait for my mom. But the smell of cinnamon was worse! I could not figure out where it was coming from. I moved over to the flowers (stupid mistake I know) but the smell only got stronger! Now I was pissed. I had been exposed to the scent for to long and the headache started to set in. Just then I looked down at the Halloween themed flower arrangements and there it was. A decorative broomstick... that was cinnamon scented. WHO DOES THAT?! I know to look out for cinnamon scented pine cones. But I have never once seen a scented broomstick. There's a first time for everything I guess.
Bring A Gun To The Knife Fight 
     Let me set the stage for you. It's early in the fall season, fall decorations are 40% off at Hobby Lobby and you have a free Tuesday afternoon to go spend all of the money on these great deals. The only thing standing in between you and a cart full of Halloween spirit and delight is the fact that you know the entire store and probably half the parking lot will smell of pumpkin spice. That's when you, the smartest of them all, pull out your secret weapon. Benadryl. Yes... I pregamed for Hobby Lobby. I took 50mg of Benadryl before we left. I did still get a splitting headache while we were in Hobby Lobby, but as soon as we left and I was able to suck in the fresh air, the headache began to dissipate. I had won the battle and was able to fully enjoy the Halloween delight. Unfortunately; because I'm #broke I didn't buy any of the fall decorations but that's besides the point.

And that my friends, is how you become the victor of the Pumpkin Spice Hunger Games of 2017. Please stay tuned for Part 2: The Cinnamon Hunger Games Christmas Edition. Have no fear though; all will return to normal on January 1st at the conclusion of what I have officially dubbed Cinnamon Season. What is your MCAD kryptonite? Let me know in the comments below!
"Be strong and courageous, do not be afraid or tremble at them, for the Lord your God is the one who goes with you He will not fail you or forsake you." -Deuteronomy 31:6

With Love,
Elizabeth <3

A Health Update

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." -Psalm 73:26 

     Today was my allergy appointment. It was follow-up from my week long hospital stay last week. If you hadn't heard I was once again admitted into ICU last week. I was on a continuous epinephrine drip for three days before I was tapered off of the drip and moved out of the ICU. I stayed in the hospital for two more days before they let me go home. Even though I've been out of the hospital I'm still having daily anaphylactic reactions. Today's appointment was to come up with a game plan. Or at least work on coming up with a game plan. 

     The appointment was very productive. We have decided that because steroids are not helping my symptoms at all it is no longer necessary for me to be on them. Which means once I finish this prednisone taper in 10 days I will officially be steroid free! We also started the process to get approved for the Xolair shot! Xolair is an injection used to treat patients with chronic hives but it has also proven to be very successful in treating patients like me with idiopathic anaphylaxis. Once approved I will get a course of at least three injections spread over a couple of months. It won't make an immediate difference but the hope is that over the course I will begin to have less and less anaphylactic reactions. There are risks to this as with any treatments but we have decided that the possible benefits outweigh the risks. I will also be monitored for several hours after receiving the injections for any negative affects. 

     We are also covering all of our basis. I will be making an appointment with an ear, nose, and throat doctor to rule out any other possible causes for my anaphylactic reactions. We want to be sure that it is not an upper airway obstruction or lesions causing my difficulty breathing. Although unlikely we want to make sure everything is covered. My allergist will also be reaching out to an expert in Mast Cell Activation for further guidance in treatment options. Our hope is that the fresh eyes will bring new ideas to my treatment plan.

     I am still struggling everyday with reactions. I am losing safe foods more quickly than I ever have before and I'm having more severe reactions to environmental triggers than I used to. I have a feeling it's still going to get worse before it gets better. But we are on the right track. Please keep me in your prayers over the next few weeks as I try to continue to sort everything out. I will try to post updates here as often as I can. If you have any questions about mast cell or just questions in general please reach out! Thank you for coming along with me on this journey! 

With Love, 

Elizabeth <3 

Mast Cell Warriors Need Your Help

Friends,
     I have had the amazing pleasure of being able to connect with some amazing people who also struggle with Mast Cell Activation Disorder. Having them in my life has been a huge blessing. They understand what I go through everyday... they get it. One of these amazing humans is Cheyanne. I stumbled across her youtube channel when I was first diagnosed and she made living with this seem doable. And then I was able to connect with her through Facebook. She has been such a big help in navigating this illness. Another one of the amazing humans I've been able to connect with is Ellie and her mom. Ellie is still just a kid and has already dealt with so much. This awful disease has robbed them of being able to eat. Their bodies rejected all forms of nutrition. Both of them now get all of their much needed nutrition through feeding tubes. The formula they were using was working, they were getting the essential nutrition that they needed and they were getting that without their bodies rejecting it. Unfortunately; the company that manufactures their formula has changed something. The company refuses to admit something has changed. But both of them had extreme reactions to the new formula. They are struggling right now. And they need our help.
     Cheyanne has set up a petition to change back to the old formula. They are not the only ones who are now suffering because of this change. It may not seem like it but signing this petition will help save lives. Please take 30 seconds to click the link below and sign the petition. You will not receive any spam emails. Every time someone signs the petition the company gets an email. I have also linked a video to Cheyanne's youtube video about the situation if you'd like to learn more.
Click To Sign The Petition
Cheyanne's Nutrition Video

With Love,
Elizabeth <3

The Silent Reactions

     So by now most of my friends and family have come to terms with my mast cell diagnosis. If you haven't heard of it, it's where my mast cells can't control themselves and constantly release far to much histamine into my body. My body is basically in a constant allergic reaction. When most people think of my allergic reactions they think about anaphylaxis. Unfortunately; with this current flare that's a daily thing. You can hear my breathing from down the hall, I turn extremely flush, my body feels like it's on fire and itchy all over the place. I don't joke around when I say I can feel my airway tightening. These are the scary reactions. These are the reactions everyone is on high alert for, they are life threatening and hit me quick often with very little warning. But these anaphylactic reactions are only half of my battle. In between those are smaller reactions.. the internal ones. They are the reactions I can fake a smile through and pretend like my body isn't revolting against itself. There's a fix for anaphylaxis, it's not a fan fix by any means, but a breathing treatment and epinephrine will fix anaphylaxis. There isn't usually a fix for the silent reactions; just time. I want to shed some light on my silent battles. So without further adu; here is what's going on inside my body. 

  I accidentally ate some sausage that was cross contaminated with cinnamon french toast. Thankfully I noticed after just a few bites that something was off and immediately stopped eating it. We were able to give IV benadryl quickly which put a stop to the breathing issues before they really ramped up (although they were coming). But unfortunately; benadryl didn't help the extreme abdominal cramping that came the following hours. I have a pretty high pain tolerance but these cramps had me in tears. It felt like there was someone taking my stomach and trying their very best to rip it in half. All I could do was curl up in the tightest little ball with a cozy blanket and wait. I think it was somewhere around hour two the tearing pain finally let up and I was able to move again. 

     On this particular sunny day I decided it would be a delightful idea to take three kids to a park. It was a great idea, they had tons of fun and were able to run off all of their tiny human energy. It was really hot that day but that didn't stop us. We piled in the car illprepared with only two water bottles for four people and we took off. It really wasn't that bad, we refilled the water bottles as needed and the heat didn't stop the kids. But the pollen.... oh the pollen. I didn't look at the pollen count that morning like I usually do. I didn't take extra benadryl before we left to make sure that I was prepared for the pollen. I sat under the trees in the shade while those kids ran their little hearts out praying that my splitting headache would go away. The pollen had given me a complete and total migraine. My headache was easily an 7.5 on the pain scale. I could see the black floaty dots I see with migraines and I was incredibly nauseous. I tried taking a rescue benadryl while we were there to see if maybe that would help... but it was to late. Once a migraine of that magnitude sets in you just have to ride it out. Thankfully; the trip to the park was relatively short lived as it was really hot. We were able to go get slurpees and I was able to go take a nap and let my head recover. 

     

 The itchies. These have got to be my least favorite of all of my internal/silent reactions. This one is mostly triggered by perfumes and scented things like those damn cinnamon pinecones that are everywhere right now. But I digress. I am extremely sensitive to smells. They usually don't trigger a full blown anaphylactic reaction but they do make my whole face itch. Especially my nose. I have walked passed people on several occasions and for hours after my nose will itch. There is no amount of benadryl and nasal spray concoction that will get rid of the itchiness either. The itchy feeling is usually pretty contained to my nose but occasionally I will get the feeling that goes down the back of my throat. I have to be really careful when I start to get the itchy feeling in the back of my throat as that's usually the first sign I have of an impending anaphylactic reaction. Just like the rest of my smaller reactions I have to let this one run its course. I do my best at not scratching my nose but I usually end up looking like Rudolph before long because I've been itching my nose so much. 

     The last internal reaction I usually get is nausea. I don't usually get sick with this one just the feeling of being eternally stuck on a ship that will never find calm waters again. I've never been sea sick... I've never really been on a sea either, but my nausea reactions are what I imagine sea sickness to be like. My legs are extremely wobelly. I don't trust myself to stand when this is at it's worst. The room might spin just enough to make me want to get sick and my stomach twists into a million knots. I usually try to tell myself "if I just eat a few crackers it will settle my stomach..." it won't, but I try anyways. I usually can't find a trigger to this one. It doesn't come after eating and it doesn't stay much longer than 45 minutes to an hour maybe. But that hour laying on the floor trying to keep everything down is miserable. 

     Well, there you have it. Having an invisible illness is hard. I want to tell people what's going on inside my body so that you understand I'm struggling. I'm not canceling plans because I don't want to hang out with you, I'm not trying to be recluse and lay in bed all day. It's just sometimes I can look so normal and healthy but on the inside my body is literally trying it's very best to ruin my life. I would take any one of these reactions over anaphylaxis because they aren't life and death.. their treatment isn't time sensitive. But that doesn't mean they don't suck. If I had a choice I would choose no reactions ever. But that's just not the case. So for now, until my mast cells can get their shit together I'm stuck with this. I'm going to smile through every silent reaction and I'm going to fight through every episode of anaphylaxis because why live life if you're not going to do it smiling? 

"Be joyful in hope, patient in affliction, faithful in prayer." -Romans 12:12

With Love,

Elizabeth <3

Where Do I Go From Here?

     What do you do when you get released from the hospital after seven days of being under the constant care of medical professionals? Where when your throat starts closing and you can no longer get air into your lungs the life saving medication and quick response is only a push of a button away. And when you close your eyes to go to sleep you know someone will be coming into check on you in a few hours to make sure you're still breathing. It's hard going back to a normal life. It's hard trusting yourself. I don't trust myself. I don't trust my body. Last night was my first night out of the hospital and I woke up twice unable to breathe, throat swelling, gasping for air and I had to deal with it all on my own. I had to mix the saline and the medication into my nebulizer and remind myself that I was okay. That it would be okay in a few minutes. I don't have access to IV benadryl so I have to wait until my throat opens back up to be able to swallow benadryl. It takes longer to get better at home. It takes more willpower to tell myself this to will pass.
     My team came in to my room before I was discharged to go over the home plan. They wanted to make sure all of my questions were answered before they gave the final sign off for me to go home. The lung doctor, respiratory therapist, my nurse that day, and the discharge planner all came in to make sure we were all on the same page. And to be honest we questioned if it was time for me to go home. I was still having life threatening reactions about every six to eight hours. The only difference is they were now being controlled by a nebulized medication and not an epinephrine shot. We questioned if maybe a few more days under constant monitoring would be beneficial. But I wanted to go home. I had spent seven days in the hospital and I just wanted to be in my own bed; so we decided to move forth with discharge. I have to set an alarm every six hours to give myself my steroid medication, you know the one that keeps my lungs open, yeah. That's a lot of pressure. Keeping myself alive is a lot of pressure.
     So what do I do from here? How do I go back to life as I know it? One tiny inch at a time. I'm staying close to home or at least people that know how to help me. I'm taking breaks when I need them and reminding myself it's okay to not be okay. I'm still having lots of reactions. I've had four since I got home yesterday. I'm staying on top of my meds and making sure I'm always near benadryl and trying to get a head of reactions when I can. I have a doctor appointment next week to discuss next steps.. I don't know where we'll go from here. I feel like I've hit rock bottom as far as health goes and I will take anything. Hopefully the labs that were drawn in the hospital will yield some answers and I will be able to get my life back on track. But for now... I'll keep on going. One step at a time... little by little.
"May the God of hope fill you with all the joy and peace as you trust in him, so that you may overflow with the hope by the power of the Holy Spirit." - Romans 15:13

With Love,
Elizabeth <3

When The Flu Shot Strikes Back

      So I had to get my flu shot. I'm applying for jobs and the health department requires people in my field to get the flu shot every flu season. So yesterday I went in to get it over with. I filled out the paperwork and waited for what seemed like forever. The pharmacist was super nice and we jokes while she stabbed me in the shoulder with a needle. And that was that. I got up and started walking out to my car.. until I couldn't breathe any more. I sat down on the floor and went for the benadryl. The pharmacist must have seen me sit down because she came over to make sure I was okay. She called 911 and I administered my first epi pen. I hate that feeling of not being able to breathe. My flu shot injection site swelled up like a damn balloon. My normal fire department rolled up and as soon as they saw it was actually me they drew up more epi and gave me another round. As well as a round of IV benadryl because I wasn't able to swallow my oral benadryl. They were awesome. They concocted some resemic epi to give me through a nebulizer as well as albuterol. We made it to the hospital without having to intubate or bipap me which was fantastic. Unfortunately, I was admitted into the ICU for the night because my throat swelling was still an issue. Thankfully, I made it through the night with only two rebounds and will be moving out of the ICU into general observation soon. They expect that I'll be able to go home either tonight or tomorrow morning which would be fantastic! Please keep me in your prayers!

With Love,
Elizabeth <3

Off To Nebraska

Friends,

     I'm not going to lie. Ever since moving back home to Vegas I have had trouble understanding why God chose me for all of this. I had made an awesome life for myself back in Nebraska, I had made great friends, had a job that I loved, but I was just to sick all of the time to really enjoy all of those things. Then, the second I moved back to Vegas, I started to feel better. I finally found doctors who understood and they've helped me find treatments that are really working. Why couldn't that have happened in Lincoln? Over the last few weeks I've started missing my Nebraska family even more. So I planned a semi last minute trip. My allergist thought this was an awesome idea. He's very concerned that this sudden uptick in my health is temporary. Although we're both praying this is the beginning of remission there's just no way of knowing. So he thought now, while I'm responding to treatment and am stable enough to travel, I should go. 

     I couldn't contain my excitement in the weeks prior. My doctor decided that since I don't have an immune system at all I needed to wear a mask on the plane as well as to block out any scents that could trigger a reaction. We put together my Emergency Room protocols and Reaction Treatment Protocols. I was able to put them into a packet to carry with me so should something happen all my emergency protocols and information was all in one place. I'm not a fan of traveling with my mask on. It tends to draw unnecessary attention, people think I'm the one sick and passing out germs. I am sick but other people's germs are more dangerous to me than I am to them. But there is one perk. A mask scares people off. So there's many times you'll get the whole row to yourself because well.. everyone is scared to sit next to you. Sometimes you just have to find the bright side. 

     Finally I was off! I packed a backpack full of Elizabeth friendly snacks so I didn't have to worry about something I could safely eat at any of my connecting airports. I arrived in Denver with no problems. I was proud of myself for making it that far! I was doing it guys! My flight into Omaha was slightly delayed so I did have time to find food in Denver and an empty area to take my mask off and eat which was nice. I was in the air when it was time to take my night time meds. It was challenging because I did have so many to take. I also got some interesting looks when I did my night inhaler. But everyone got over themselves and there were no real problems. We hit some crazy turbulence and being jostled around made my stomach turn but thankfully that was it. The pressure change of taking off and landing didn't cause a reaction and I am soo grateful! I had finally, at 11:00pm made it to Omaha. 

    Saturday, one of my best friends and I made our way into Lincoln. We decided to get in on the Husker Game Day hype and walk around downtown and by the stadium. So. Much. Fun. I used to work first aid at all of the Husker Games so I would be at every single one. But there's something about participating in it that is so exciting. We ate lunch downtown and went to my favorite ice cream place ever. Then we treked another mile over to the stadium. We watched the marching band perform as well as the football players and coaches arrive. I've seen it from far away before, but being right in the middle of all the game day hustle.. there's nothing like it. I was able to say hey to some of the people I used to work with at the game which was nice. Right about when the game was supposed to start we headed back to our car. We walked at least eight miles during all of this. I was so impressed with both of us! I didn't pass out or have any reactions and we walked in the heat so much. My feet did hurt but that wasn't a huge deal. Erin's heels were bloody from a poor choice in footwear but we survived!  
     Sunday was state fair day! I love the state fair! We never get to go to the fair in Nevada.. mostly because no one actually knows where it's located. This is my third year going to the Nebraska State Fair and it just keeps getting more fun every year. We were able to watch the Firefighter Challenge. Which is where fire departments all across the state compete against each other. It was super cool to watch. Then we met up with Katie! She was there to watch her ag students show their animals in contests. I can't say I have ever watched pig shows before. But it was pretty interesting to watch. But in between pig shows I was able to eat all the fair food! Well... by fair food I mean three bags of cotton candy and the best prime rib sandwich. We visited all of the exhibitors that gave out free food, shot archery, and learned about agriculture. Well, I learned about agriculture because ya' know I'm a city girl who knows literally nothing on how corn is made. But the best part is we finished out the night with a Cole Swindell concert!
     The rest of the trip was super relaxing. I hung out with Katie in Wahoo for a few days. And then back into Lincoln to hang out with more old work partner and her family. I played play dough and tickle fights with a two year old who still couldn't entirely say my name but he and his brother are pretty darn cute!
      On Thursday, I flew home to Vegas. It was a long travel day. My first flight to Phoenix was delayed by 45 minutes which was fine but inconvenient. When I finally made it to Phoenix I had to walk from one side of the airport all the way to the other side. They do have the moving walkways but just standing on those were making me dizzy. I finally found a nice guy driving a golf cart and asked him for a ride. He was super nice about it and drove me all the way to my gate! Where I sat. Until of course a lightning storm blew into Las Vegas and they shut the airport down. We weren't able to take off and our plane was delayed for an hour at first. Then the lightning cleared in Vegas, but of course a dust storm started rolling into the Phoenix area and we weren't allowed to take off, so now we were delayed another hour. Finally at 7:25 we were able to take off.
     It was the best vacation I could have asked for. I really needed it. I really needed to see all the people I love and miss so much. My Nebraska family has a huge place in my heart and they will never know how much they mean to me! Thank you guys for giving me the strength and love and encouragement from far away. I love you all and can't wait to see you next time!!

With Love,
Elizabeth <3