Continuous Benadryl Infusion

"But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint."

-Isaiah 40:31

     I've officially been home for three days! I am still so exhausted and sore. Turns out when you start actually doing things after a month of doing nothing your body tends to be pretty mad at you. So I've had to take lots of naps. I am so happy to report that the continuous benadryl infusion is still working so well! I'm still learning how to live with tubing attached to me 24/7 but I'm adjusting. One of the biggest things I forget is that I'm now attached to my purse so I can't just throw it on my couch when I get home and walk away... I've tried it doesn't go well. Anyways; a lot of people have been asking how it works and what it looks like. So I figured I would try to explain it here! 

     

Once a week I get a delivery from my home health company. It's a big box with 7 bags of saline with benadryl mixed in. I receive 11mg of benadryl over the course of an hour. It doesn't make me sleepy because I am getting such a low dose over an extended period of time. If anything I've noticed I have a little bit more energy because the medication is actually doing it's job and calming my mast cells down enough that my biggest symptom of fatigue and brain fog has actually lessened. Also in the box is 7 days worth of IV tubing, the supplies to change my dressing on my PICC line, batteries, and a few other misc. things.

     Every night around 6:00 I have to change the benadryl bag. It takes about ten minutes start to finish. This involves "spiking the bag". The IV tubing has a pointy end that I insert into the benadryl bag. Then I run the tubing through the pump and prime the tubing. This runs the medication through the tubing to get rid of all the air. Finally I hook it up to my PICC line. I run the tubing up my arm and through my shirt. The pump is programmed at my home health pharmacy and then locked so I can't change the dosing at all. I can only turn it on and press run. 

   

  The biggest issue I've ran into so far is because I am running the pump 24/7 I am having to change the batteries twice a day. Usually once around noon and once around midnight. Changing the batteries takes maybe three minutes but I am having to remember to put replacement batteries in my purse in case I'm out and about. I surprisingly haven't had it been because of a kink in the line at all. I was expecting it to happen quite a bit because I do have the tubing going under my shirt.Although it has, and will be, an adjustment I'm still so thankful to finally have found something that seems to be working. I am currently on the low end of dosing so I can go up on dosing if needed but I haven't had to do that yet. The goal is to be on the benadryl for about three months. This will give my body time to stabilize. We will also be trying the xolair shots again and hopefully the benadryl will give the xolair time to build up and start working and we can back off of the benadryl. If you have any questions about the CDI or ambulatory infusions let me know! I'm no expert but I'm learning. 

With Love, 

Elizabeth <3 

The Longest Stay Part: 3

"Lord my God, I cried out to you, and you healed me. O Lord, you brought my soul up from the grave; you kept me alive, that I should not go down to the pit." Psalm 20:2-3

     So here I sit. Day 16 of this hospital admission. I have officially been off of the epi drip for four days with NO ANAPHYLAXIS!! The benadryl pump is proving to be incredibly effective! I could have never imagined it would work so well. But now we're in a predicament. I'm in California and the home health company that I would be using is in Las Vegas. It is nearly impossible to coordinate me going home on a benadryl pump from California. So the plan is to transfer me via air ambulance back to Las Vegas, get everything figured out with the home infusions and then discharge me from Vegas. My ICU doctor and allergist gave the insurance company clearance for transport on Tuesday... It's now Friday. Everything is set, the airplane, insurance approval, everything. We're just waiting on a bed to open up in Vegas. Which is sounding completely impossible. 

     I like to consider myself a patient person but I'm starting to get antsy. I feel great, honestly better than I've felt in a really long time. The benadryl is fighting my crazy mast cells for me so I feel like I have more energy and feel less run down. But I'm still stuck in the ICU. I'm still tethered to an obscene amount of wires and people are still keeping track of how much I pee. I don't belong here anymore. My body knows that, my brain knows that. So I'm getting inpatient waiting for this bed to open up in Las Vegas. I want to be home in my own bed. I want to be off of the constant heart monitors and I want to get back to my new life with benadryl coursing through my veins 24/7. Because for the first time in a while I see hope that I can live a normal life. At least for a few months while we let the benadryl do it's thing before we try to get me off of it. I can't tell you how extremely difficult it is to let this happen in it's time. I haven't felt actual sunshine in over two weeks. I haven't been able to take a proper shower in over two weeks. This waiting game is not one I'm a fan of playing. 

   

The nurses have been extremely nice! They have gone above and beyond their job description by bringing me jello late at night, sneaking me brownies from the cafeteria downstairs, just coming into chat when they have a few extra minutes. They have been fantastic. I would have lost my sanity a long time ago if it wasn't for their kindness. I've been here long enough that I'm starting to learn about their lives outside of the hospitals and we share pictures of my friends and their kids. I guess if I'm going to be holed up somewhere I might as well have nice people surrounding me.

     Hopefully I'll be shipped back to Vegas tomorrow. If not after the New Year I will work on just getting discharged from here. I'll keep playing the waiting game. Because although it's a sucky game to play at least I'm stable, at least I'm safe, at least I'm not in anaphylaxis. 

With Love, 

Elizabeth <3 

The Longest Stay Part:2

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

     Today was a fun day. The circumstances were incredibly sucky but if I'm going to fly in a private jet I'm going to enjoy every darn minute of it. The flight crew picked me up from the hospital in Las Vegas around 8:30 in the morning. They were extremely nice and one wasn't bad to look at ;) We took an ambulance to the airport and then I was loaded up first class in my fancy jet. It was a super small plane but it was only an hour flight and I got to lay back on a stretcher for it so I can't complain about the leg room. We took off around 9:15ish. A few minutes after take off the oxygen masks fell from the ceiling. Not because anything was wrong but because it was an older plane. I'm not going to lie I questioned my confidence in the small plane when that happened. It was a quick one hour flight into Burbank. We landed and I was loaded into a second ambulance. It took longer to get to the hospital from the airport than it did to fly from Vegas, Thanks LA traffic. 

     We made it to USC, which is a much much larger hospital than my usual one. I was moved into my new temporary home in the 5th floor South ICU. The accommodations here are nowhere near my normal hospital's. There is no couch or large TV and there really isn't room for visitors but I was here to get fixed so I really didn't mind what the room looked like. My wonderful mother, who I will never be able to thank enough, drove out shortly after I got settled in.

     I met with the intensivist that would be in charge of my case. He was nice and asked tons of questions about what we have tried and what they were thinking about trying. Their main goal was to get me off of the epi sooner rather than later so a few hours after I got here we started very slowly titrating back. The next morning I met with the allergist that would be on my case. She has two other mast cell patients she sees, but admitted I was her worst off. She agreed that we needed to get me off of the epi drip and we'd see what we could do from there.

   

 Getting me off of the epi went about to be expected. There were lots of benadryl pushed through my IV so I was constantly tired and napping. IV pushes of benadryl also give me a loopy feeling sometimes so I felt like I was in space most of the time. We were able to get me off of the epi for about 12 hours before I went back into anaphylaxis twice. They reconnected the epi at a low dose until we could figure something else out. This was when I brought the idea of a continuous dyphendyramine infusion to her attention. I had researched it previously and it was brought up in Vegas but it's not widely used or a widely known option. CDI is a continuous benadryl drip instead of epi. The continuous benadryl insures that my mast cells stay calmer. It doesn't cure anything but it greatly reduces the amount of anaphylactic attacks as well as greatly reduces the amount of rescue meds needed. The allergist had never heard of it so she went to work researching it. The next day it was decided that this was indeed going to be my best shot at getting off of the epi drip long term. They started the benadryl drip on Christmas Day and I'm not going to lie it was kind of the best Christmas present ever.

     The world's best mom drove out to LA again to spend Christmas with me and my benadryl! Somehow Santa found me even though I was in a different city! I woke up around 3am and there was a stalking and a Santa gift waiting for me next to my bed! I was completely shocked I wasn't expecting that at all. My momma came down to the hospital and brought lots of activities. I kicked her butt at Rummy, we tried to do a puzzle but I swear it was missing pieces so we gave up on that. The hospital also had a special Christmas dinner of steak and mashed potatoes. It was surprisingly delicious! Somehow my momma managed to make this Christmas special even though I couldn't be home. Hopefully I'll be home soon so we can do Christmas in January! Stay tuned for part III tomorrow! 

With Love, 

Elizabeth 

The Longest Stay Part:1

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

      I'm not going to lie. There have been times in this last 16 days that I have definitely not felt the power of this bible verse. I had my most scary anaphylactic reaction a few weeks ago. I called 911. I don't remember much else other than the firefighter pulling me from my car and the sudden rush of adrenaline that went through my PICC line shortly after. The rest is gone. I have no memory of the ride to the hospital, I have no memory of the first hour in the trauma room, I have no clue what happened. I just know that when I did start coming back around the ER doctor was trying to place an airway tube. Thankfully; the third round of rescue drugs did their job and I narrowly avoided being intubated. This was the beginning of my longest hospital stay to date. 

   

 That night they put me back on an epi drip and I was admitted into the ICU. This is "normal" I figured I'd be there for a day or two as we backed off the epi drip and I'd be able to go home. That's not what happened though. Day two we tried backing off the epi pretty quickly, I cautioned them against this but they didn't listen. I made it about three hours off the epi drip before I went back into anaphylaxis. It wasn't anywhere near as bad as the day before but my oxygen levels dropped pretty rapidly. They reconnected the epi and gave a nebulized version of epi as well as benadryl. I recovered from this one fairly quickly. While on the epi drip I was still having "leaking reactions" migraines, itching and burning skin, upset stomach, the whole nine yards. These doctors consulted with Dr. Afrin who is a mast cell specialist in New York that has been following my case. He suggested we try an emergency dose of xolair. I had talked to my doctors about xolair previously and we were going to try it but the plan was to wait until after NewYears.

     We were able to get insurance approval for the emergency dose and they administered it on Saturday... It didn't go well. The thought right now is that I reacted to the medication being given to fast and not the actual medication itself. But either way it was a miserable reaction. It started off with the injection site swelling quite a bit and then I broke out in hives and extremely itchy red blotches. I got extremely nauseous and dizzy all at once. My body couldn't figure out if it wanted to heave or pass out. And then the dystonia hit. Dystonia looks exactly like a seizure except I'm "there" for all of it. My eyes are open and I can hear everything but I shake violently and my muscles get so tight and rigid. This freaked the ICU doctors out. They were once again considering intubation because I was having a hard time keeping my oxygen levels up on my own. It took two rounds of epi injection, benadryl, and ativan to calm everything down. It was after this reaction the ICU docs decided I was officially out of their scope of practice. They made the decision to transfer me to USC Keck hospital in Los Angeles. 

    It was definitely not an expected move but a very much necessary one. I was now facing Christmas in the hospital miles away from family. God has an interesting way of working everything out. Stay tuned for part II tomorrow. 

With Love, 

Elizabeth <3 

I'm Just Done Fighting

   

     It's been a minute friends. I have tried to sit down and write several posts but there were just none I was passionate about enough to finish. I'm a bag of mixed emotions right now, and for good reason. I had two wonderful weeks of no issues. There was the occasional ocular migraine, or upset stomach after eating but I went two whole weeks without a hospital admission, without having to use an epi pen, without being stuck at home. And they were a great two weeks, probably one of the best few weeks I've had in over a year. I want to go back to those two weeks.
     Last Sunday I went to church and then went to Subway right after. Subway has always been a safe food for me. I get the same thing every time and never have any issues with it. A few bites in my throat started to feel scratchy and my whole body got hot and itchy. I remember trying to take benadryl but must have slipped into unconsciousness because I came to in the ambulance with the medics trying to start an IV and a needle being stabbed into my arm with more benadryl. They had already given me epi in the shoulder and my oxygen levels came up slowly. It's never a good thing when the fire crew (who has never ran on you) knows who you are because other crews talk about you at the station. They knew not to give me anything else until I woke up and could tell them what I can and cannot have. My body cooperated the rest of the ride. In the ER I had another reaction and another the ER doc said "it's not possible to have that many rebounds" I know better. I've experienced the truth of multiple anaphylactic reactions one right after another. They decided to admit me. The attending physician came downstairs and told me there was nothing else they could do for me.. There is they just refuse to consult my specialist. I decided to be discharged that night because there was nothing beneficial for me there if my doctor wasn't willing to actually help me.
     The very next day I started feeling short of breath and it got extremely hard to swallow. I hadn't eaten anything that day so I don't know what could have possibly triggered it, but either way it was happening. I was home alone so I tried to call my mom my phone must not have been working because I tried to call her and my dad and all I got was "Verizon can't complete your call please try again later" so I pushed the "help" button on our GPS app. I don't know what happened after that. I don't know how 911 was called, because it sure wasn't me, but they were. They arrived and I was face first on the floor. Yes, I was at least breathing more than 3 times a minute this time. They loaded me in to the ambulance. A few minutes later the medic looked at me and said "this isn't anxiety is it?" I nodded my head no. He looked at my oxygen level which was now dipping into the 70's. He gave me a round of epi in the shoulder and 50mg of benadryl through my PICC line. I was struggling to breathe my breathing became so labored that I was starting to zone out. He started bagging me, which is basically him breathing for me, and they turned on the lights and sirens. When I got to the ER they immediately decided to admit me.
      9 hours later I was still in the ER, they told me it would be 34 hours before they could get me a bed upstairs. I gave up. I had nothing left to give. I was extremely itchy since the first benadryl wore off so I asked for more. My entire body was red and splotchy and there were hives on my chest. The nurse said she'd be right back with some and I didn't see her for another hour and a half. I decided to sign AMA, against medical advice, and have a friend drive me home. My mind was, and still kind of is, in a dark place. There are still people out there who thinks this is just anxiety or that I'm doing this for attention. That there is no way a 21 year old could be this sick. I can tell you every time I go into anaphylaxis I have to make the decision of staying and fighting or closing my eyes and letting the darkness consume me. I honestly think that's why I've been found unconscious so many times this week. Is I've given up the fight. I don't run to my epi anymore, if I get to it I get to it. I don't stay at home where it's safe anymore and I certainly don't wear my mask outside like I should. I've stopped fighting. I hate saying that out loud but it's true.
     I had a doctor's appointment yesterday to go over lab work. I came back positive for the gene mutation that has been found to cause MCAS, and one of my prostoglandin reports came back 4x over the normal limit. The specialist my doctor was consulting in New York says it's time to switch treatment options. Neither of which I'm thrilled about but one option has an incredible success rate in decreasing anaphylactic reactions from multiple times a week to once every few months. But it's still a newer treatment option in the medical world and all of my doctors are pretty nervous to start it. My take on it is there's no way this option could make anything any worse. Why not just try it? I want nothing more than to go back to school right now. Not even work, I just want to go back to school. Where I can meet other people my own age but I can't right now. I have a dismal quality of life right now. Wouldn't we want to try everything we can to fix that? To make it so I'm not in the hospital multiple times a week? I'm just so frustrated. Doctors are giving up on me, friends are giving up on me, I'm giving up on me.
     So I'm praying for strength and peace. Because no matter how tired I am or frustrated I am God's got it all planned out. He'll put me in the right hands and he'll get this figured out. "Tell everyone who is discouraged, be strong and don't be afraid! God is coming to your rescue." -Isaiah 35:4

With Love,
Elizabeth <3

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.

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 

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

I Am Allergic To Benadryl

If you don't know I have Mast Cell Activation Disorder. Which means at some point in my life I will become allergic to everything. It sucks and I hate it but it's a fact of life that I face every day. So much so that I take 50 mg of benadryl every four hours to keep symptoms at bay. This is causing me to be sleepy. All. The. Time. But because of this disease if I don't have name brand benadryl and not the "allergy relief" brands I am okay. Because the way the medication is compounded I am allergic to. So if all you have is benadryl and it's an allergy relief brand I will take it. Because it doesn't affect my body enough that I'll care. However; knowing this about myself I do make life threatening decisions every second of every day. Here's How. 

I AM Allergic To Water 

Knowing this about myself sucks. I am so hyper aware of everything all the time that I question if the water I drink will cause anaphylaxis. I love certain brands of water and I refuse to drink certain brands like Arrow Head. I don't know how I decide which water to drink and which water not to drink but I know that I hate Arrow Head so much that I wonder if it's causing an allergic reaction. And I know that I like water from a Britta filter so much that I wonder if it's because I'm not allergic to it. I also wonder if this is a big reason I love swimming but don't go. There are some pools I'm in that I get so itch and red I wonder if I'm allergic to the chlorine. Which is why I think I've had so many severe reactions at Wet N' Wild I refuse to go there because I wonder if I am so allergic to their chlorine it's affecting me I have to go to the hospital. But I wonder if I were to go to another water park I'd be 100% fine. 

Sleep Is A Trigger

I am not allergic to sleep. But sleep affects my life so symptomatically that I am. Because I sleep is such an allergy symptom relief for me I feel like if I just go to bed for a few minutes I'll be fine. That lack of sleep and sleep exhaustion makes it look like I'm drunk. So if my symptoms are bad the likelihood is that I am so exhausted and dehydrated that I look 100% normal if I haven't slept a solid amount in the last month. So if I ever seem drunk, high, or tired. Tell me so I can go sleep for a few hours. 

I Hate Unfamiliar Social Situations 

I want to go to church and youth group so bad but have never found one accommodating symptom wise that I have never gone. Now that I know this there were several places I felt safe enough to and never gone and I regret that. So if you feel comfortable handling something if it were emergent please let me know. Because I probably want to but symptom wise I am not because I don't feel safe there. 

Life with this disease is a living hell. I can't explain that to people. But I wouldn't wish it on the worst person. So please take that into account if I cancel plans. 

With Love, 

Elizabeth <3 

Ephesians 2:5 

HOW to Best Help Me In An Emergency Situation

     Everybody lately has been asking me how. How can I best help you. Right now what can help you? With life right now this second how can I help you. The truth is guys when you ask me that... I don't know how. How is such a big word for me that the way I use it in my head I have talked myself right to unconsciousness twice... today alone. Who knows how many times my words in my head have affected this before. But what I have figured out is how you can best help me in the future. When something emergent medically in my life happens I now know what you can do to help me medically! Here's how.
My Thoughts And Anxiety Affects My Health Directly 
I don't know  how everybody else's mind affects them when they're sick. But I'm sick so often my brain is OK with it that I talk to myself the whole time. That to everyone else when I'm in the hospital it doesn't matter what I'm going through but I am the happiest pers

on there. So much so that when I'm hooked up to a breathing machine that is breathing for me so much that I'm happy. And I can't explain that feeling to someone unless you've ever had it happen to you. And I'm okay with that.
When I am Unconscious I Can Hear EVERYTHING you say 
I don't know if you know this if it does 100% so please act like it does. When I am passed out on the side walk so much so that they called a full code on me they started CPR on me I could FEEL it AND HEAR it and still REMEMBER it afterwards so when dealing with emergency situations such as this please keep this in mind when doing things. It will 100% affect me in the long run. So if CPR IS 100% NECESSARY IN THAT MOMENT DO IT!!! Because it will help me positively.
You Are Going To HAVE To Talk Me INTO Things 
If making me feel better is going to influence me taking my epi than please do that. Right now positively impacting my health would be to take epi because I know this. But long term I know that it's not. So please do talk me into things if you think it's necessary no matter how closely you're trying to positively impact me.
I Can't Describe Things To You 
Medically, I know the right words to describe things to you that you understand what's going on to me. Mentally, I have ZERO clue. So when I tell you I have the most severe chest pain I've ever had in my entire life. I know that that is going to get me admitted into the ER. Mentally, I can't describe what that feels like except for where and how much. If you were to ask me where I'll tell you and how much I'll tell you on the pain scale a ten. But mentally you doing know that that means my throat is also extremely itchy and swollen, I'm constantly burping because I'm nauseous, My chest pain is so severe, I can hear, I can talk, I can breathe but I'm still I am unconscious. I can't explain that to anyone and I wish I could. Which is why for so long so many medical professionals have thought I was FAKING being passed out.
Knowing these things I have been surviving for so long I am scared to go to sleep and it is affecting my day to day life. So PLEASE next time you think something emergent is happening like the fact that I am itchy or I tell you I have another life threatening symptom please tell me hey Elizabeth do you feel like you're in anaphylaxis right now. And I say yes please DO something about it and try to talk me through it. Because I may be mad at you for asking when it happens but PLEASE know I will not be mad at you for it later.
But still. Even after saying this I may only need xanex and be 100% FINE living normal life. So when all of these emergency things ARE happening please be the smart one of the situation and say hey maybe all she needs is anxiety medication at a high dose and be fine. With my health I am toeing such a thin flexibly placed line that it is both POSITIVELY AND NEGATIVELY affected my life. And because of this please remember these things when I am struggling symptom wise and look fine and every last medical professional is telling you it's just anxiety because my reality is it probably is JUST anxiety and I am  "over reacting".
I am just now figuring this out. I am struggling so much so physically that no one has pointed it out for days and for the first time I am realizing holy shit. Right now if I were in the hospital maintaining this kind of homeostasis for so long medically I WOULD without a doubt be dead right now because they would be doing CPR on me right now.
I know that freaks everyone out and that makes you scared to be with me alone. Trust me. I get that I am scared to be with me alone to the point I just choose not to sleep because I'm scared. I'm realizing that so much right now that I am contemplating if I were this aware all the time I would be in the hospital in 15 minutes. And that scares me. So if I ever ask you to drive somewhere please know medically I can. Mentally I don't know how I could even survive to get there. Which is how I'm trying to judge getting to places. And that's not fair to anyone. So know if we don't hang out or I bail on plans it's not because I can. Because I can go to work, I can go to Nebraska, I can drive, and cook. But right now I don't think that I will be able to. And that's okay.
Sorry this was such a long one. But thanks for sticking around! I appreciate it. If you ever have any questions on best to help me please ask me. I love educating people about what's going on in my life. But I never call or respond and that's just because I can't.

With Love,
Elizabeth <3
Jonah 2:1

I'm Trying

    I am trying my hardest to be happy in my life right now. I am trying to be excited about this new chapter in my life and all of the new adventures ahead of me but it's been extremely difficult. I broke down this morning because I miss my church in Nebraska. I had made such a great life for me in Nebraska but all of a sudden I've been uprooted and having to figure everything out all over again. But I'm trying. So here's what's been going on the last few weeks while trying to get my life back together.

Beach Weekend!
     The family and I took a weekend trip to the beach in California. It was hard because my POTs was acting up. I adventured around California with my camelbak backpack filled with water and tried to stay as hydrated as possible. I'm trying to not let my illnesses get in my way. I'm finding ways to adapt to them and to try to be as normal as possible. But even after all of my adapting by the end of the weekend I was exhausted both mentally and physically. But even though I was flushed and dizzy most of the weekend I did have a good time. I got to walk along the beach and racked up about 5 miles of walking throughout the weekend which is amazing for me! I also tried boogie boarding, which didn't work out to well because I got slammed against the rocks and pushed under the waves, and then admitted defeat to the ocean and just watched from a distance.

First Hospital Visit in Las Vegas!
     Tuesday morning I was hope alone, except for the AC guys who were up in the attic. I don't know what happened. I was completely fine one minute and then the next minute I was a gonner. I always call the fire department when I have a reaction because it can go from bad to extremely bad really quickly. I called. They were having a hard time finding me. In Nebraska you were able to go online and fill out a form that would be kept in the dispatch system. My form basically said if they received a call from my number and no answer to automatically send help and my address for when I am unable to speak. But here in Vegas we don't have that system so they were having a difficult time finding me. The dispatcher asked if I was able to make it outside. I could but not all the way out to the street. The fire truck couldn't see me from where I was sitting so they kept driving. They were finally able to find me and took me to the hospital. My mom met me there and was able, for the first time, to see the reality of my mast cell activation disorder. They were able to give me my usual steroid, nebulizer treatments, and benadryl to help calm my reactions. Only after my two rounds of epi.

Another Ear Infection!
     Shortly after getting back from the beach I started getting extremely feverish. Like I would be running a fever of 103 and could not get it to break no matter how hard I tried. At first I thought it was just my body getting used to a change in my blood pressure medication dosage but one morning I woke up with extreme pain in my left ear. I was crying it hurt so bad. My friend drove me to Urgent Care where I have never been so humiliated by a "doctor". I'm used to medical professionals not believing me because my illnesses are invisible. And as frustrating as that is, I understand it. But this doctor completely dismissed the fact that I came in with a high fever, irregular heart rate, and extreme ear pain. She told me to stop being a drug seeker and was trying to discharge me without even looking at my ear! I finally talked her into just looking in my ear. And even after confirming that I did have a major ear infection she still wouldn't give me an antibiotic! Claiming that I was only trying to get add another medication to my list... Why? Why would I want to add ANOTHER medication to my list? Why would I want go through another set of side effects and take another pill if I really didn't have to. I needed the antibiotic to get better from the ear infection. After having to fight for the care I needed she finally wrote me a scrip for Z-packs and she had me escorted out of urgent care by security. I won't be going back to their facility anymore.

...Yet Another Allergic Reaction!
     On Friday, we had a family dinner. My parents were out of town camping but the rest of my family was there. I had yet another reaction. I couldn't immediately peg what caused it but I started to get extremely nauseous. I walked back over to my apartment and got sick shortly after getting home. I took two Benadryl and sat down on the floor to wait for them to kick in and make the nausea go away. (Gosh, I can't wait until I can get IM benadryl that will work faster.) The anaphylaxis hit again, fast, like always. I called my mom because that's what our deal was. My dad answered her phone and stayed on the phone with me until my Grandma and my uncle were able to come sit with me. By the time they got over to me I had already administered epi. They didn't understand why even though I was doing better I needed to go to the hospital. But my protocol is as soon as there is airway involvement I have to give epi, and if I give epi I have to go to the ER. My grandpa was kind enough to drive me to the ER and sit in the waiting room while I got checked out. I was taken back and was stable for a while. While sitting and waiting for the doctor I had a secondary rebound. The nurse came to check on me because she could hear me breathing... She hooked me up to the heart and O2 monitor, and umm well it wasn't good. I was sitting at 78% which is not great. The doctor came in and ordered benadryl IV, pepcid, and a steroid I had never gotten before. The nurse pushed the steroid first and all of a sudden it felt like my whole body was on fire. All I could do is scream and try to breathe. It burned so so bad. The nurse quickly pushed the benadryl and sat with me until the burning sensation dulled a bit. They moved me to a room right across from the nurses station so they could keep a constant eye on me. Which always makes me feel more at ease. They gave me IV normal saline and a neb treatment and then ended up releasing me later that night. After all of that we realized that the reaction was indeed caused by the antibiotics the cooky doctor from the night before put me on. The ER doc prescribed a new one before I left which was nice.

Keeping On!
     Even though the past few weeks have been a complete roller coaster that I feel like I can't get off of. A roller coaster that I don't want to be on I'm still trying to keep my spirits up. My new roommate and I met my parents up in the mountains and went for a short hike. I'm still trying to keep my hopes up and not let all of this medical jargon get the best of me. I'm trying and I think I'm doing a pretty good job at trying. I will keep my hope in Christ. Because I know he has a plan for me. Let's keep trying friends! Let's not lose hope. Because one day, it'll get better.

With Love,
Elizabeth <3

Fuel The Fight

    Hello friends! It's been a week. I have moved back across the country to Las Vegas and I have officially been here a full two days. And man they have been a full two days. I'm still extremely overwhelmed, like mental breakdown at 4pm because I can't find my favorite pajama shorts amist all the half open boxes. But before I get to that mental breakdown lets start at the very beginning... Getting to Vegas.
     I left Nebraska around 8am and my parents didn't leave until around noon. We were planning on stopping in a town about 4 hours west of Colorado. I was about an hour out and just getting past the mountain when it hit. It started with the itchy chest and the feeling of fire ants in the back of my throat. I managed to choke back two benardryl and some water. I thought maybe this would just be a small reaction so I kept driving. About ten minutes later it was full force. I pulled over on the side of the interstate (which scared me more than the actual interstate part) and called 911. I always call when I'm alone and have to use an epi pen in case it doesn't help or it gets worse. Than at least I know help is on the way. The only part was I was now in a canyon with not a whole lot of cell service. It took about three minutes longer to get them dispatched to me because they just couldn't find me they also couldn't hear what I was saying because of the poor service. They finally found me. I was one epi in and about to hit myself with a second one. When the fire department got there my O2 was in the 80's range. They took me to the back of the ambulance and gave me a neb treatment. My breathing did a 180 and started improving. I decided not to go to the hospital by ambulance. They followed me to the next exit to make sure I was okay and then I stopped at a gas station to take a break. I was able to make it to my destination in one piece although I was two hours later than expected. That's the reality of this one minute I'm having anaphylaxis and the next minute I'm fine. It's frustrating and scary.
      The thing is, I'm using that fear to fuel me. To fuel my fight. I'm trying to push my boundaries and I'm paying for that every minute. While in Colorado I went for a hike to Hanging Lake which is a mile and a half hike straight up. It kicked my butt. And it took a lot of effort and a lot of stopping and taking a break before I finally made it. And that climb, and the view at the top was worth it. I'm taking one step at a time. Moving home has been daunting. I loved my independence and being far from home. I feel like even though I'm still technically living on my own just near my parents, I'm still under a microscope. It's a huge adjustment coming back. But I know it's what's right right now. I've been going from one doctor to another.
      Since I've been home, even though it's only been two days, I've already had an allergist appointment with my favorite allergist. One that doesn't say it's all in my head and that I'm holding my breath to lower my oxygen levels. He's so helpful! We talked today about what our next step is after my two month prednisone taper is done in three weeks. We talked about two options the first one is cromolyn sodium and the second one is a Xolair shot. He told me to go home and research them both and to come back in a month and we'd discuss it further. He cares about my opinion. He is thinking the cromolyn sodium is the best option for me right now, but it comes with GI side effects. And since I'm already having some GI symptoms he wants approval from a gastroantorolgist before he puts me on it. I haven't had a chance to set up that appointment yet, but hopefully I can get into one relatively quickly.
     During the appointment my POTS got the best of me and my blood pressure tanked when I stood up. The doctor was still in the room at the time when I collapsed. I didn't pass out which is always a good thing. I just got really weak and my legs apparently decided they no longer wanted to support the rest of me. They took my blood pressure while I was still sitting on the floor and it was around 92/68 I think. We know that abuterol has an adverse affect on my blood pressure. For normal people albuterol lowers the blood pressure, it tends to raise mine. The doctor gave me a breathing treatment and we were able to get my bp back up to around 110/74ish. He had me drink two bottles of water before he would let me drive home. He wanted me to go to the ER and get fluids but we decided that it wasn't necessary yet. I went home and ate ramen for the sodium and drank 64 more ounces of water before I let myself take a nap. I was exhausted. That hour doctor appointment wiped me. My fear is fueling this fight. This never ending exhausting fight. "Be strong and take heart, all you who hope in the Lord." Psalm 31:24  Keep strong friends!
With Love,
Elizabeth <3

The Fire During My Hospital Stay

     Oh fifth floor adult inpatient unit, how I wish I wasn't so familiar with your halls. I was recently released from a five day hospital vacation. I wish I could say that it yielded more answers to what feels like my never ending health problems, but alas, it did not. I don't want to say it was a complete waste of five days and a ton of hospital bills, but right now that's what it feels like. I didn't have my computer with me to update my blog while I was there, but I did have my phone! So here's a recap of me week!

     Intake was about a three hour process. I was supposed to be a scheduled admission but something on the hospital's end got messed up and there wasn't a bed already ready for me. Which was frustrating and I should have just ran for the hills then. Thankfully, I wore my comfiest clothes and had my phone charger handy so sitting in the waiting room wasn't a huge deal, I was just hungry.
      While I was sitting in the waiting area starving myself to death my body had a different idea. I had an allergic reaction. I noticed my chest was super itchy and that I was starting to get nauseous. I followed my protocol; take 50mg of oral benadryl and wait. After about ten minutes of trying not to itch my chest my throat began feeling tight. I took a puff of my albuterol inhaler to see if maybe that would help. No relief. It started to get way worse. The impending doom feeling was setting in which is my sure sign it's time to get help. I staggered up to the front counter clutching my chest. The lady could probably hear my breathing from across the room. I stabbed myself with an epi pen and we quickly got me a wheelchair over to the ER. I was then admitted as an ER patient and six hours from the time I originally showed up that morning I was taken to my room. It was a frustrating start to the next four days.

     Day two was supposed to be my big testing day and then go home on day three. Turns out that wasn't the case. Since being admitted I hadn't been able to go a full 12 hours without a near anaphylaxis episode. And without knowing what was triggering them my doctor wasn't comfortable sending me home. The silver lining of having so many reactions in a controlled environment is that we were able to constantly monitor me throughout the whole thing. The doctor said I have what he would call "atypical anaphylactic reactions". Which means that instead of my blood pressure dropping like a normal anaphylactic reaction mine actually sky rockets. 10 minutes before a reaction my blood pressure would be around 115/70s. During a reaction my blood pressure would shoot up to almost 180/90s. This would happen consistently almost every single time. After doing some research my doctor was able to link this to mast cell activation. He said a lot of patient's with the same thing as me have the same time up blood pressure jumps during a reaction. He said this is probably why it gets mistaken for a panic attack so often. It's highly highly unusual that the blood pressure would go up instead of down. So at least we're slowly learning new things about my condition. Baby steps right?
     Day four was the most difficult day emotionally. I was just done with being in the hospital. They wouldn't let me off of the inpatient floor (for good reason) so I felt like I was trapped. The floor went in a circle and if you walked that circle 9 times it made a mile... I walked four miles that day... I watched several episodes of HGTV and The Food Network shows only because that's all that was on. I was starting to get a meek outlook on being there. Up to this point I was fine with being an inpatient. I knew that by being there I was safe, getting the care that I needed, and we were learning more about how my messed up body works. But day three my brain was just done. My nurse was a little on the crabby side and wasn't much for small talk and conversation, the medication they had started me on was starting to make me feel weak and lethargic and I was starting to get sick of hospital food. It was just all around a bad day mentally. On top of all of that my IV decided to start leaking a strange color fluid so we had to start a new one in my hand. Which is my least favorite place to start an IV. I hate it, and it took 45 minutes and a pediatric nurse to find a vein that was usable enough. The only real excitement I had that day was this fire alarm/ drill. It ended up being a false alarm but we were actually told to be prepared to evacuate the floor. Because a real fire had been reported on our floor in the East tower. The fire department showed up (none of them were cute dangit) and we were given the all clear and I was able to resume my laps around the hallway.

     I was finally released around noon on day five! No really big new news to report, but at least I had a little more information. At least I had been validated by a doctor that this wasn't anxiety or all in my head. As sucky as it was I would do it again to learn more about how to better take care of myself, and how to better treat my reactions. Hopefully, I'm able to stay out of the hospital for a while though. This is me in my car with my IV site bandaged up which means I got the okay to go home! Friends, whatever your sucky situation is this week, hit it head on. I believe in you! 

With Love, 

Elizabeth <3 

   
                                                                                                             

She Told Me This Is Going To Kill Me

      This picture was taken back when I went to Vegas last month. I challenged myself to go hiking, not my smartest decision I know, but I love hiking and I wanted to prove to myself I'm not going to let anything stop me. So I did it and this was my victory picture. What you don't see is the before this picture. The 100* weather, the heart rate of 190 for most of it, the having to stop and sit every 5 minutes, the six times I nearly passed out, and the three times I actually did. This was right when my health really decided to take a turn for the worst. For me, this was a documented picture of the beginning of the end. I want to go back to how I felt in this picture.
    You see, a week before this picture I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and a week after this picture I was diagnosed with Mast Cell Activation Disorder. I'm currently in what doctors are calling a "flair" of my MCAD. I have been in the hospital multiple times for anaphylaxis that has nearly killed me. One of my visits had sent me to the ICU for a couple of days because I was just so unstable. While I was there my doctor came in and said those life altering words. "We don't know how else to treat you, but eventually this is going to kill you, we just hope it's not soon." Who wants to hear that?! Who tells someone that news in that way?! I try to fake my way through this illness all the time. And I know I do a pretty good job of it when people tell me they think it looks like I enjoy being sick. I don't, I hide the endless nights crying myself to sleep, the constant prayers to God to change something... anything. I don't know why this is happening to me. I don't know why he has put any of this in my life and I hate it. I've had multiple yelling matches with my wonderful creator asking why me, what did I do to deserve any of this? So I sat there and swallowed that awful news and put on a brave face in front of the doctor. I didn't want her to know how broken I was inside at that moment. As soon as she left I lost it. I started crying completely alone. And I didn't stop crying until my heart rate got so high that I passed out. I cried myself to unconsciousness over what I just heard. I'm not scared of dying, that's not what scares me. It's a part of life. It happens to everyone and I know that through my awesome and wonderful God I have an eternal home in heaven. So it's not dying that scares me, it's the fact that THIS is going to kill me. That I could go because I can't get to my epi pen fast enough. It's the fact that I have something so rare and so new to the medical field that my doctors are SCARED to try any aggressive treatments. And she dropped such an atomic bomb like that and then released me from the ICU and sent me home where I am alone most of the day. Where I'm not hooked up to monitors 24/7 that detect what my body is doing before I do.
     There; in that hospital room is where I realized this is going to be a life long struggle until it eventually kills me. There is no cure. There is no out. I would love to sit here and write to you that I have moved past this moment in life. That I'm back to being able to hide my illness and living life to the fullest, but I'm not. I'm still struggling through that news, that realization. But, while I'm struggling through this I am still finding strength in my Lord.
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, comfort me." Psalm 23:4
     I will continue to fight this and battle with doctors about treatment options and try everything I can to get ahead of these diagnosis' and I encourage you to do that as well. Where ever you are in life, keep going. It's a dim light but there is definitely a light at the end of this dark and twisty tunnel.

With Love,
Elizabeth <3