Allergic Reaction in the Movie Theater

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   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.

Controlling Anxious Thoughts

     Tonight I am letting my thoughts consume me. I try to not let this happen but there are times when I can't control it. And tonight, is one of those nights. Last Friday I was officially diagnosed with POTS, today I was diagnosed with plausible mastocytosis, and at this point I'm scared to find out what tomorrow will hold. One of my cardinal rules is to not google things until I am officially diagnosed and the doctor has already given me an overview as well as a treatment plan... I have been breaking that rule a lot lately and honestly, I think that's where a lot of my anxiety is coming from.
     I looked mastocytosis up online after the allergist called me today and put me on medication for it because he is 90% sure that I will test positive for it, and he doesn't want to waste valuable treatment time. We think this is what is causing my random anaphylaxis as we can't link it to one specific thing. There is no cure for this, I stumbled upon an article that says the average life expectancy after diagnosis is approximately four years. FOUR! I have since read more and talked myself off that ledge. A lot of the complications from this that I have found is people don't know what to do during the anaphylaxis part. I can handle the anaphylaxis part, it scares the shit out of me, but it's nothing I'm not equipped to handle.
     It's nights like these, when I am so consumed by terrifying thoughts that I can't calm down, that I have to solely rely on my Christ. I should always solely rely on him, but I strongly believe that he put medical professionals and medication on this Earth to help, but tonight is not a night that either of those are necessary. Tonight is a night when only he is needed. When the only comfort and solace I will find is his ever loving arms. I know that this will be a long and difficcult uphill battle and at this moment in time things are looking incredibly dim, but friends, I will make it through this. You will make it through what ever it is you are seeking solace from. We will make it through.
"Come to me all who weary and burdened, and I will give you rest" Matthew 11:28

With Love,
Elizabeth <3

Idiopathic Anaphylaxis?!

          Today I had an allergist appointment. I was actually super excited about today's appointment because I was looking forward to getting a second opinion on what has been causing all of my anaphylactic reactions as well as getting a pulmonary function test, which I've never had done before. This doctor was beyond amazing. He actually took the time to fully understand all of my symptoms and every reaction that I've had since August. He also took the time to call my current allergist in Nebraska so they could consult while I was in the room. I couldn't have asked for a more thorough appointment. One concern this doctor expressed was my symptoms matched eerily close to a textbook mast cell activation case. So he ordered a blood draw that will show preliminary results for that. I haven't had a chance to look up what mast cell activation actually is, but he said I really didn't need to start worrying about it until we have these blood results back. So hopefully within a week or so we'll know where I stand with that. But, I will cross that bridge when I get there. Right now I have other things to worry about.
     We also did a quick skin prick test for a cinnamon allergy which is what my doctors back in Nebraska kind of linked my reactions to. The skin prick test wasn't nearly as daunting as I expected it to be. They did a positive control test, a negative control, and the cinnamon slurry. I reacted as expected to the positive control test which means it swelled up as well as became extremely itchy. My cinnamon test became red and what looked like hives developed around it but there was no itchiness. So we had to rule this test inconclusive. The doctor told me to try to stay away from it as much as possible, but the cinnamon probably wasn't the root cause of my anaphylactic reactions. So at this point he decided I have idiopathic anaphylaxis which means we don't know exactly what is causing my reactions but I am still having life threatening anaphylactic reactions.
     The plan for now is to wait on the blood draw as he thinks the mast cell activation may be causing my body to give itself anaphylaxis. If that blood draw comes back normal than at that point we will discuss doing further allergen testing. Even though I didn't leave the office with set in stone answers I feel confident that someone is listening to me, how I am feeling, and what I am going through. I think this doctor is definitely on the right track and I am looking forward to working with him more to figure out what is the root cause of all my allergy dilemmas.

With Love,
Elizabeth <3

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

The Good And Bad Of Doctors

 

   Yesterday I had an initial appointment with a new GP or general physician. I also was hoping that she'd spearhead my team of doctors. That was not the case. It was an awful, she didn't listen to a single word I said. Every time I would try to explain what was going on symptom wise she would interrupt me every two seconds. She only wanted to treat my labs and not the heart rate or the syncope. She wrote me off as some one who was over reacting. I was in the ER the other night and she didn't really seem to care. She spoke way to fast and got frustrated when I asked her to slow down and reexplain everything. It makes me feel terrible that I asked for clarification. When my parents came in she finally started to listen which was twice as frustrating. I'm 21 years old why wouldn't you listen to me in the first place?! My parents were finally able to convince her to refer me to a cardiologist and she decided to refer me to an endocrinologist. That itself was terrible. I hated that doctors appointment and I left in tears. I felt like it was a total setback and that we weren't going to get any answers.
   
     Today I had my cardiologist appointment. The cardiologist and all of his nurses were AMAZING! They actually took about an hour to listen to me. They looked at all the paperwork that I had brought in from other doctors. I asked them if I could show them the jump in my heart rate when I stood up and we did several tests in the office. Do you know how great it is to be heard?! While I was there he officially diagnosed me with POTS (postural orthostatic tachycardia syndrome). I am seeing a different kind of cardiologist in two weeks. He will discuss the diagnosis and how we will further treat it. But, until then we increased my blood pressure medication because it hasn't done much yet. I also talked about how terrible the side effects to that medication have been and he discussed how to combat that and make it a little more effective. I'm ready to try it again! He also talked about life style changes I can make until my next appointment as far as diet is concerned. We also scheduled a stress test so that we will know how much exercise my heart can tolerate so hopefully I can start slowly working out again which will eventually help make my symptoms better. I left yesterday's appointment feeling so drained but left today's appointment with answers and a plan! I'm so excited to continue looking for answers to my potassium problem next week with the endocrinologist. There is so much hope in me now! I've been so discouraged lately and now I feel refreshed and hopeful!

     There is so much hope friends! Whatever you are trying to figure out, what ever answers you are searching for, or what ever you are discouraged about... There. Is. Hope. I am praying for you and rooting for you!

With Love,
Elizabeth <3

What I Wish I Could Tell You

   * This post is something I have been struggling with lately. I'm sure this is something a lot of people with chronic illness struggle with as well but these are based on my experiences and everyone's experience may be different. If you have anything you would like to add let me know! We're a stronger community when we build each other up and share though and ideas.*

Hi friends! I decided to make this list because I'm not good at sharing what I'm thinking aloud. This is a list of things I wish I could tell my boyfriend. I haven't shared these with him directly because it's a lot to talk about and once again I'm better at putting my words onto pages instead of sharing them out loud. So here's my list!

*We started dating before I was seriously sick. You were kind of pulled into this out of the blue and the fact that you've stuck around this long means so much to me.
*There are very few days when I feel well enough to go out or be social. Please be patient with me when we have plans and all I can manage is sitting on the couch watching movies with you.
*It takes so much energy to get ready everyday let alone get prettied up to go out. If you come over on a non date night and I'm in sweats with my hair up in a bun please don't be offended. I want to look good for you but sometimes I just can't.
*I know I sound needy often, and trust me when I say I try not to be, but sometimes I just want to talk about life and you're the only person I can think to text. Sometimes just asking how I'm feeling that day makes me feel special and thought about.
*I know I can't just rely on you. That's a lot of pressure to put on someone. I try not to only rely on you, I try to find support in other people too. I'm sorry if you still feel like I'm only turning to you. You're still someone who makes me feel safe and like everything is going to be okay.
*I wish you would just ask me questions. If you have a question about what's going on with me health wise ask, if you want to know why I canceled plans, or if you haven't heard from me in three days and want to make sure I'm still alive just ask me. I'm not good at volunteering information. I am better at explaining things as it is asked.
*Just by being someone I can talk to you already help me so much.
*I would really really love it if when you know I'm having a shitty day and you have extra time if you just ask if there's anything you can do to help. There are some days when walking from my bed to the couch is enough to start planning my funeral let alone trying to figure out how to feed myself. Even if you don't have time to hang around dropping off food so I at least don't starve from salvation is enough for me to never be able to thank you enough.
*Please tell me if I'm being to needy or clingy. It's hard for me to keep myself in check and sometimes I don't notice I'm to in your face.
*I'm still Elizabeth, the joyful, delightful, fun human being I was when we first met. It's just masked sometimes. I try to bring her out as much as I can!
*The biggest one I want you to know is you always have an out. We're dating and my health is a lot to spring on someone and expect them to just be okay with. So I want you to know that if it gets to much to handle you have an out. You can tell me that all of this is to much handle and walk away. No harm, no foul. It will suck on my end but I would completely understand.100% I would not hold a grudge against you for walking away. I hope and pray that you don't, that you stick with me through all of this the good and the bad times, but I understand if you can't. But, just a heads up, if you do take the out I may be keeping the shorts I may or may not have stolen. Mostly because they're comfy as hell.
*There's a lot more that I want to add to the list but this is it for now. Thank you for sticking with me this far and putting up with the sick Elizabeth. It may not get better but, I will learn how to cope with it better. Better days are to come and I hope you're apart of them.

With Love,
Elizabeth <3

The Daily Climb: A picture album update

Hey friends! I've been struggling to write lately, but I have been taking lots of pictures. I have put them together in a viewable album. Hopefully this can give you guys a better look at what day to day life is like. I hope to do more of these in the future because I like doing these way more than vlogging. Let me know what you think! I have lots of doctors' appointments coming up that I'll update you all on soon. I'm sending my love to all of you!
With Love,
Elizabeth <3

The Daily Climb Photo Album