Learning To Live With The Whispers

"For the spirit God gave us does not make us timid, but gives us power, love and discipline."

-2 Timothy 1:7

     I am still learning to live life differently than everyone else. I'm still learning to live with the stares of people walking by and the whispers of people gathered in the corner watching me closely while I am trying to change my bag of benadryl out to a new one. This involves pushing saline and heprin through my lines and leading a line through my arm hole and down my shirt so it is out of the way. But people just see me drawing up "drugs" and reaching up my shirt. It's not the easiest thing to explain to people. 

     I went to my church's super bowl party this weekend. I was extremely nervous to go because I am still new and don't know a lot of people, and what if I have a reaction to the food, or what if Melvin the IV pump freaks out. But I mustered up the courage and I went for it. Unfortunately right in the middle of it was a scheduled bag change. I walked out in the lobby and found myself a seat on an empty couch and started the process. No one came over and asked me questions but I can hear them whispering close by and their darting glances when I make eye contact with them. It took ten minutes, a little longer than usual because I was distracted. I only have 15 minutes until Justin Timberlake's half time performance and I was NOT about to miss that. 

     I finished priming the tubing and started the infusion threading the tubing through my backpack and connecting it to the line under my shirt (nothing was showing the line reaches to about my belly button). I cleaned up my mess and shut my backpack walking past the staring group. I rejoined the people I knew at our table and swooned over Justin while questioning his wardrobe choice. 

     It's days like these when I realize my life is not normal. My day to day activities aren't what people are used to. I had fun at the party and would go again 100%. I just have to remember MCAS, POTS and Melvin the IV pump are always going to tag along with me. What did you do for Super Bowl Sunday? 

With Love, 

Elizabeth <3 

All About Home Health

"God is our refuge and strength, an ever-present help in trouble." 
-Psalm 46:1
     

     With constant IV medication and a picc line comes with the delightful experience we call home health. Home health is hit or miss. You have to find the right company that fits your needs. My first home health experience was not a great one. The first time I was sent home with a PICC line I was sent to the home health company that was ran by my insurance company. They deemed me "not sick enough" for home health and made me drive across town once a week for a ten minute dressing change. They also refused to change my dressing for almost three weeks because they lost the paperwork and refused to get it straightened out. 

     This last admission when we were getting my continuous benadryl the insurance home health company refused to take me on as a patient again. They told me at home infusions were not possible and even if they were they would not give me the benadryl I needed. In walks in my current home health company. These angels worked tirelessly to get me home from the hospital on the benadryl infusion and have everything I would possibly need.

     My current nurse comes twice a week. Once on Monday to draw blood (this is fantastic because it comes straight from my PICC line AND I don't have to wait in line at quest). And then she also comes on Friday to change my dressings and draw more labs. She is seriously the sweetest lady and actually has another mast cell patient on her case load! Each visit takes between 20-50 minutes depending on if we have to change my dressing.

     The other component is my awesome pharmacist! She calls me once a week on Monday so I can reorder what ever supplies I need. She then sends all of my line care supplies and benadryl infusion bags overnight so I receive them by Tuesday morning. My pharmacist is fantastic! She's sent me supplies midweek when I forgot to reorder something, and when my UPS driver hid my weekly delivery a little to well, she stayed on the phone with me reading out directions the UPS driver left. 

     If home health is a big part of your care I highly recommend shopping around first. I am extremely happy with my team right now. Which part of your care team do you lean on the most? Do you have a home health company you love? 

With Love, 

Elizabeth <3

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 

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 

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

Beautiful Weight

     I know you think that your words are helpful or encouraging or even just funny. But they're not. They actually hurt a lot. When I was put on prednisone for the first time I had no idea the kind of terrible awful impact that drug would have on my life. And yet, it's one of the many medications I take daily to help keep me alive. I've tried backing off of it and trying something else but my body is relying on that steroid daily to keep me from slipping into anaphylaxis. So I stay on it, because right now that's my only option.
     Prednisone is notorious for causing weight gain. You haven't had carb cravings from a steroid until it's 2am, you're half asleep wondering where you moved the bread to so that you can make a grilled cheese sandwich. I hate prednisone. Trust me, I hate gaining weight. I hate that this medication makes me gain weight. I'm trying everything I can to lose weight and curb future weight gain from this devil drug. But with conditions I can't work out like everyone else. I can only go for walks. I can't lift weights because I'll become fatigued and dizzy and pass out. I can't go for runs because my heart rate can't control itself and I'll end up with an irregular heartbeat and in the ER. I try to limit my intake but I'm on such a high sodium diet that my foods are by nature going to be of the unhealthy kind. I would love to not eat Ramen for breakfast anymore but right now that's my best option.
     So when I'm eating a snack, you saying "ugh you know that'll go straight to your hips" isn't funny at all. I know you laugh after saying it but I don't. I go home and try not to cry because I know I don't look my absolute best right now. I also know it'll be months.. maybe years until I can get back to a "normal" weight again. And what happens when I'm on this medication long term? When these six months turn into a year or two years? Now I have to think about what you think about my weight for another couple of years.
     I know you are trying to be kind when you offer to workout with me. Because you think that you can motivate me to push past my limits. But my limits are there for a reason. I used to be able to lift weights and run and sure, I may still be able to do that today but that will reek absolute havoc on my body. And the last thing I want to do is hold you back from your workout goals because I can't stand up anymore because I tried pushing past my limits.
     But my absolute comment is "man Elizabeth, it looks like you've lost weight this week." I haven't trust me. I've been standing on the scale every night hoping that maybe that would be true and it's not. I know you're trying to be encouraging but that comment isn't encouraging at all. Especially when once again I find myself on the scale hoping that something has changed. And then looking down and realizing either nothing has changed or I've gained more weight.
     I have a positive body image about myself.. Well, as positive as it can be. I know that I am beautifully and wonderfully made. But lately all of these comments about my weight have started to turn that positivity into negativity. So, I'm asking you kindly. Please stop mentioning my weight. Please keep your helpful and not so helpful comments about my weight to yourself. Because I'm over here trying to live my best life with or without all of my extra beautiful weight brought on by something that's helping to keep me ALIVE.

With Love,
Elizabeth <3

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

Allergic Reaction in the Movie Theater

   \
   I had a weird allergic reaction at the movies yesterday. I was fine until about 30 minutes after the movie started and I started to get extremely itchy on several places around my body. I was so itchy I actually left the movie and went to the restroom. I tried just wetting down a paper towel and rubbing it on my legs to see if what ever caused the itchiness would come off. But after a few minutes of that my skin began to sting and turn bright red and splotchy! There were hives all over and I just didn't look good. I wanted to go home and take benadryl but the whole family was at the movie and no one wanted to leave to take me home. I was miserable.
     When I finally got home I took a benadryl and hopped into the shower to see if maybe that would help... nothing. The hives spread further down my legs and arms, and my chest started getting red and blotchy. At no point did I feel like I was going into anaphylaxis but it's still scary. I ended up taking two more benadryl and letting myself go to sleep. I woke up a few hours later a bit nauseous and still blotchy red, but at least a majority of the hives and itching was gone which was nice.
     It worries me that what ever my reactions are are actually getting worse and it's getting harder and harder to treat them quickly. It's frustrating not having answers. My allergist's office is closed today but I'll give them a call tomorrow and see if he has any ideas on what could have caused such a reaction and if there's anything I can do to prevent it. Until then I'm just praying I can keep everything under control.

My Week In Pictures May 14-21 2017

   
Hi Friends! I just created this week's The Daily Climb picture album! This is where I post all of the pictures I take throughout the week to give you guys a better look at the day to day life of a POTS patient, chronic illness warrior, and average 21 year old. I hope this gives you guys a better understanding of what I go through on a daily basis <3

The Daily Climb May 14th-21st

I Almost Went Paralyzed Again...

     On Friday my cardiologist officially diagnosed me with Postural Orthostatic Tachycardia Syndrome. Because of that he increased my mididrine dose from 5mg daily to 15mg. I'm not a huge fan of this medication to begin with it always makes me nauseous and if I don't eat within ten minutes of taking it I get extremely sick. Yesterday, even though I ate when I took it at lunchtime, I must not have ate enough and ended up getting violently sick. The problem with this is that my potassium will drop incredibly fast when I get sick. Even though I was trying to keep up with me getting sick by taking potassium it wasn't working. I was still starting to feel the effects of low potassium. My team and I decided it was best to go into the ER to be monitored and replenish the potassium safely instead of guessing at home.
     I was triage and taken to a bed right away when they saw how high my heart rate was and that it was also skipping beats. I could barely walk, stand, and breathe on my own by the time I got there. I was incredibly anxious because low potassium paralyzes you, it starves your muscles until they are no longer able to move and then major muscles start shutting down. The last time my potassium was this low I was taken to the ER by ambulance and the paramedics were breathing for me because my body just didn't have the capability anymore. My potassium was indeed extremely low at 2.4. I was starting to have tremors and bouts of not being able to breathe. We started infusing IV potassium as quickly as we could. They gave me a total of 160meq of potassium over a four hour period. Unfortunately, potassium is also hard on my stomach so about two hours into the infusion I ended up getting sick again and we had to redo 80meq of potassium. I was in the ER for a total of 8 hours. The doctors there and I decided that if I responded well to this treatment then there wouldn't be a reason for me to stay overnight because we do know what caused the initial drop. I'm extremely thankful for my team of doctors who I can call whenever I need them as well as amazing ER staff who were quick to react and got me back where I needed to be.
     I'm going to talk to my cardiologist on Monday about looking into other medication options or seeing how I respond to a lower dose. Hopefully, we'll be able to figure everything out soon and I'll be stable enough to go back to Nebraska in a few weeks!

With Love,
Elizabeth <3