Rare Disease Day 2018!

"And we know that in all things God works for the good of those who love them, 

who have been called according to his purpose."

-Romans 8:28

February 28th is Rare Disease Day! As someone who has a few rare diseases I am so appreciative of this day to spread awareness! I thought I'd take today to answer some questions about my rare and invisible illnesses to help spread awareness about what I, and others, face everyday. I stole these questions from Sunshine And Chaos. 

What illnesses do I live with?

~I have been diagnosed with Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, Asthma, and Raynauds. 

What year were you diagnosed?

~I was officially diagnosed with MCAS, POTS, and astma in 2017 and Raynauds in 2018.

When did you first start seeing symptoms?

~I started showing symptoms in high school. I was misdiagnosed with anxiety and conversion disorder which my cardiologist has now confirmed it was POTS the whole time. 

What is the biggest adjustment you had to make? 

~The biggest adjustment I had to make was learning my limits and how to push myself with out going over board.

What do most people assume?

~Because I don't ever look sick most people assume that I am feeling fine all the time. Or that I am faking my illnesses. 

What is the hardest part about mornings?

~The hardest part about mornings is getting up. My POTS is usually the worst in the mornings so getting out of bed and getting dressed typically spikes my heart rate into the 160s or higher. Which leaves me very symptomatic and short of breath. 

What is your favorite medical TV show?

~I LOVED Night Watch when they were still filming in New Orleans but now I'd have to say Grey's Anatomy. 

What is one gadget you can't live without?

~Non medical gadget would be my phone. Medical gadget would be Melvin my benadryl pump.

What is the hardest part about nights?

~By the end of the day my body is usually in So. Much. Pain. So trying to fall asleep in pain is pretty difficult.

What medications do you take and how much?

-IV Benadryl Infusion (11mg an hour 24/7)

-Zyrtec (40mg)

-Zantac (350mg)

-Asthamnex (4 puffs)

-lexipro (10 mg) 

-potassium (40meq)

-birth control 

-epi pens (as needed)

-benadryl (50mg as needed)

-ventolin (1 puff)

What alternative treatments have you tried?

-I tried acupuncture and I noticed a difference but the negative side effects outweighed the positive effects. I also go to talk therapy, which doesn't necessarily count as an alternative treatment, but I love it very much. 

Would you choose to have an invisible illness or visible illness?

-I would choose no illness if that was an option. But invisible illness makes it easier to "blend in".

Are you able to work? If yes what do you do?

~I work at my parent's company as the professional printer paper restocker and all around office help. I would looove to go back into the field as an EMT. I am also a part time student in the Fire & EMS Administration program. 

What would people be surprised to know?

~People would be surprised to know how many of my day to day symptoms I don't talk about or hide. I don't share every tiny symptom but that doesn't mean those symptoms don't exist. 

What has been the hardest thing to accept? 

~The hardest thing to accept has been the fact that I may never get 100% better. I will always be battling with my body to maintain my base line. 

What is one thing you never thought you could do with your illness?

~Be happy 

The commercials about your illness:

~HAHAHA there are no commercials about my illness. No one has ever heard of them before and there's no cures or medications to advertise. 

What was one thing that was really hard to give up?

~My career. I miss being an EMT and the likelyhood I'll be able to return to the field is slim to none. 

What is a new hobby you've taken up since your diagnosis?

~Blogging and running my spoonie Instagram account. 

If I could have one day feeling normal again I would...

~Hike the Grand Canyon again. 

What is one thing people say that gets under your skin?

~Are you feeling better today? or How are you feeling today? The answer will almost always be no I'm not feeling better. And no I am still not cured. 

But I love it when people:

~Research my illnesses and understand them. Or understand when I have to bail because my health just isn't cooperating.

What is your favorite motto or bible verse?

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." 

-Psalm 73:26

What would you want to share with someone who is newly diagnosed?

~Don't give up. There will be hard days but the good will outweigh the bad. Don't let your bad days trip you up.

What is something that has surprised you about living with an illness?

~I was most surprised at what living with my illness has taught me. From learning to persevere, learning to not take anything for granted and learning to enjoy the littlest things..

What is the nicest thing someone has ever done for you while you were ill?

~I was living in Nebraska and inpatient for like a week. The sweetest nurse knew I was alone and took my dirty pajamas home and washed them so I would have clean pajamas and she would sneak me in ice cream. 

I'm involved in rare disease day because:

~I want to spread awareness for not only me and what I'm facing, but spread awareness for all the rare and orphaned diseases. There is still so much research to be done and spreading awareness will only help propel that research and funding. 

The fact that you read this list makes me feel:

~Encouraged, loved, and understood. 

Thank you for reading my Rare Disease Day question and answers! Please help in spreading awareness for rare and orphaned diseases by sharing this post or sharing awareness in general. I appreciate you all! 

With Love, 

Elizabeth <3

The Ugly Truth About Dysautonomia

"Dear friend, I pray that you may enjoy good health and that all may go well with you,

even as your soul is getting along well."

-3 John 1:2

     Dysautonomia is the dysfunction of the autonomic nervous system. The autonomic nervous system is anything that your brain and body do automatically or without you specifically telling your brain to do it. So breathing, blood pressure control, temperature regulation, your heart beating, those are all examples of your autonomic nervous system. My system is just all together screwy. This is what causes my POTs or Postural Orthostatic Tachycardia Syndrome. It's also what causes me to be freezing in the middle of June and random fevers for no reason. But what I didn't know, is that Dysautonomia also effects the eyes. 

The nerves and blood vessels
 in the ol eye balls. 

     I made an eye appointment a while ago because my primary noticed my pupils were not reacting to light like a normal person's eyes would. My pupils also "click" when I look from side to side. I had also noticed a significant decrease in my vision especially at night. The decrease came on rather quickly. So to be sure we weren't missing something I made the appointment. I was so impressed on how knowledgeable this eye doctor was in Dysautonomia. Especially because I usually have to explain what it is to medical professionals. She said that I failed most of the vision tests and that my prescription would be moved up quite a bit. She also informed me that unfortunately, for someone my age this shouldn't be happening. I should have roughly the same vision from my 20s to my 40s. However; my vision is still getting worse. This is a result of my Dysautonomia. It's rather common for someone with a severe case to have constant worsening vision problems. The good news is the nerves and blood vessels in my eyes look healthy and seem to be functioning properly. She does not think that my vision will decrease so rapidly that it will lead to blindness, Thank God. But it is something we will have to continue monitoring. Which sucks because eyeglass lenses are expensive. 

     I'm so thankful to have a team of doctors that are watching out for subtle changes that I may dismiss. I'm thankful to have the health that I do have. For now, I'll be getting used to my new prescription and hopefully not squinting as much!  

With Love, 

Elizabeth <3 

*photo creds: Thank you @sassy.tachy.wacky on Instagram for the great Dysautonimia photo!*

The Struggles of Being Muggle Sick

"But I will restore you to health and heal your wounds, declares the Lord."

-Jeremiah 30:17

     I was struck with the plague. I should have known it was coming. I took a trip on a flying flu can last weekend. And I should have known that with my iffy immune system I was going to get sick. Even though I wore a mask the entire time I was in the airport and on the plane and I washed and sanitized everything. I still hit the infectious disease jackpot. 

    It started Wednesday night. I was nauseous but I blamed it on my lack of eating healthy food. Then Thursday I started noticing muscle fatigue and just all over fatigue in general. I woke up and went into work because I thought it was just a cold. I could barely swallow because my throat was sore and I had the chills. On Friday, I left early from work. And on my way home (TMI Upcoming) got incredibly sick on the side of the road. I decided not to risk it and went into Urgent Care. Where I was hit with the news I had strep throat/ the Hong Kong flu virus/ and a small UTI. Oh the joys. My fever was also creeping up. 

     Now for most people.. yes, this would suck. But not only am I sick with this normal people crap. I still have to manage all my rare crap. I still had to wake up from my Nquil coma to change my benadryl bag. I still have to make sure I'm taking all of my dreaded potassium plus more to stay on top of the sickness. I am allergic to almost every anti nausea medication so I was on my own on that front. The antibiotics they gave me need to be taken four times a day. Being sick and then normal people sick on top of it just wears on your body, both mentally and physically. I think I have finally turned a corner and am on the upswing of things. Hopefully. But this is just a good reminder to everyone, chronically ill or not, wash your hands and stay home if you're contagious. None of us want to deal with this. 

With Love, 

Elizabeth <3 

It Takes A Village

"How good and pleasant it is when God's people live together in unity!"

-Psalm 133:1 

     When I started blogging I didn't expect anything to come of it. I started it as a place for me to ramble and rant about life and health and a place to keep more of a journal of events in my life. I had no idea it would snow ball into a place for other people who are just like me to connect and cheer each other on! Before joining the online spoonie community I felt alone and isolated. I had amazing friends but none of them truly understood what it was like living with health issues every day all day. After finding the spoonie community I have been able to establish friendships that reach far beyond those who live near me. I have been able to connect with another girl my age in Las Vegas who also has Mast Cell. I've been able to connect with a delightful pal with a dog Willow who lives in a different state, but has encouraged me to keep fighting more than once. She is also the creator of the amazing card at the top of this post! 

     I have also found hope, encouragement, and answers on facebook support groups. They have been there night and day to help me learn the best way to advocate for myself, answer all of my random questions that doctors struggled to answer, and encourage me when all I wanted to do was give up. They were there. They have gone through what I am going through. They have moved the mountains I am currently trying to climb. They too, have fought with doctors on getting appropriate testing and understanding. 

     I don't know where I would be mentally without these amazing humans who stand (or sit) with me every single day. The spoonie community is a strong one, there is no bond like the friendship between two people who have never met but share the same daily struggles. To all of you spoonies thank you. And to all of you non spoonies, I appreciate your support and encouragement as well. Sometimes it really does take a village! 

With Love, 

Elizabeth <3 

*If you have a moment I highly recommend finding @idleidealsartwork on Instagram! She is so incredibly talented and is doing AMAZING things with her talent all while fighting her own battles. You can request a card for someone you know who is battling a chronic illness or disability on her Instagram page! She also has spoonie stickers available which are just as amazing as her cards! And if you really sweet talk her she might send you a photo of her adorable wittle dog Willow!* 

Meet Melvin 3.0

"Jesus Christ is the same yesterday and today and forever."
-Hebrews 13:8

     While on my vacation this past weekend my IV Pump (Melvin) decided to get a little weird. It would start beeping with an error code of "Error: Stuck 7 key" and wouldn't do anything unless I turned it off and then back on again. The 7 key was never stuck but this happened two times over the weekend. And then during class on Tuesday night it did it again. Except just turning it off and back on again didn't help. I had to take the batteries out while it was still running put them back in and then turn it off and back on again. This process happened twice during class. 

     That night I called the 24 hour Coram assist line. They connected me to the on call nurse who tried to walk me through troubleshooting it. Unfortunately, we pushed one to many wrong buttons and Melvin decided to just flat out quit. So the Coram angels got to work. They programmed a brand new pump and sent it out to me two hours later. At 9:30pm I made the switch, said goodbye to Melvin 2.0 and said hello to Melvin 3.0. 

     So far so good. I was able to connect to the new pump and restart my infusion without missing a beat. The courier took my old IV Pump back to the Coram pharmacy for me. I was extremely impressed on how quick they were able to help me fix the problem! Hopefully this new pump will last a little longer than the old one. 

With Love, 

Elizabeth <3 

I Went On An Adventure!

"The Lord himself will go before you. He will be with you; he will not leave you or forget you. 

Don't be afraid and don't worry." 

-Deuteronomy 31:8

     I went on an adventure.An actual adventure! I flew to Kansas City on Friday for a weekend filled with family and cold weather. Oh how I missed the cold weather. This was my first trip with Melvin the IV pump and my benadryl bags. 

     It was... interesting trying to get through TSA in Las Vegas. Prior to my trip I called the TSA Cares hotline (I highly recommend this if you are traveling with any kind of medical condition or equipment) the lady was extremely helpful and told me how to best prepare. She also notified the TSA supervisor of my flight information so they were expecting me Even though I have TSA Precheck they still asked me to take off my shoes and jacket. I then told them my backpack could not go through the scanner because a) it's attached to me and b) I was advised by my pharmacist that the benadryl bags should not go through the scanner.  They then told me everything except for the medical supplies had to go through the scanner. Which was false. I explained what the TSA Cares lady had told me. They went to find a supervisor who of course was training a new agent. The new agent was now in charge of my bag check and pat down. And she was 100% by. the. book. Every last item in my bag was pulled out and swabbed for any residue. After she cleared by bag she told me she had to see the PICC line site. As I went to remove the sleeve that covers my line she yelled "please put your hands where I can see them! Stop making sudden movements!" Which of course caused Metro officers to walk over ready to take me down. So that was fun. 45 minutes later I was FINALLY cleared from that miserable security checkpoint. 

     Southwest is seriously the most amazing airline when it comes to accommodating your needs. I notified them when booking my flights that I have severe allergies and would be traveling with medical equipment. I was able to preboard the flight to wipe down my seat and tray table and to introduce myself to the flight attendants. They were all just so understanding and kind. On my flight home from KC it was a pretty empty flight. One of the flight attendants noticed one of the passengers was wearing extremely strong perfume and of course this lady chose the row directly in front of me. The flight attendant told me politely that she thought I may want to move seats, I am so so thankful she was looking out for me. She also helped me change my benadryl bag mid flight and was genuinely curious about why I had Melvin the IV Pump. When we landed in New Mexico the flight crew switched and she brought the new flight attendant back to meet me and fill her in. I can't thank Southwest enough for everything they did to make this trip as painless as possible. 

     Missouri was fantastic and cold! Friday night I stayed at my cousin's house and then Saturday and Sunday I got my own hotel room. I came prepared with a bulk pack of handwarmers and lots of beanies! I was hoping for snow but all I got was ice, which isn't nearly as fun. On Sunday morning I got on the elevator to go downstairs for the continental breakfast. Well... we made it to the first floor but the doors never opened. We waited another minute or two and still nothing. We frantically pushed the door open button and nothing happened. So we called the front desk and were told it would be another 2 hours before they could get the elevator guy to come free us. My IV pump started beeping low batteries and I told the front desk lady that I didn't have any batteries on me and my medication would soon stop running. That was a slight fib, I had 3 sets of extra batteries on me but they didn't need to know that. But that worried them enough to call the fire department to come equipped with a crow bar to free us! Unfortunately, there was no continental breakfast left after we had been rescued. 

     I had such a fun time hanging out with family! I knew traveling would be exhausting and would come with a long recovery time but it was so worth it. I feel more confident now that I'll be able to live a somewhat normal life even when my body is rebelling against me. What adventures have you been on recently? Or what adventures would you like to go on? Hopefully there are more fun adventures in my future! 

With Love, 

Elizabeth <3 

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 

PICC Line Malfunctions

*Just a warning some of the pictures in the post will be somewhat nasty*

"The Lord delights in those who fear him, who put their hope in our unfailing love."

-Psalm 147:11

     I have a PICC Line. It is basically an IV that is inserted into my upper arm and is semi permanent. Because I have to have 24/7 access the PICC line was a great option for me. Last week during my dressing changed we realized I had started developing a reaction to the dressing, or tape we put over the line. My skin began blistering and draining, in all honesty it was miserable and gross. We were watching it closely for signs of infection but I never showed any. I never had a fever, my arm never swelled, the site never turned red it was just irritated. Well Saturday morning I looked at my site and it was super gross and nasty. This line leads straight into my heart. I was not about to take any chances on infection so I decided it would be best to take a quick trip to the ER. I should have known trips to the ER are never quick for me. 

That's what a blood clot looks like.
Terrible picture I know, but still
kinda cool.

     The triage nurse was extremely rude saying I was over reacting and it was probably just a skin allergy that was causing the drainage. I reminded her again that this line went straight into my heart and I wasn't willing to risk anything. She rolled her eyes and told me that I looked fine and they would probably send me home in a few minutes. I told her that would be fine if that is what the doctor decides is best. She also said that I should stop seeking attention by wearing a mask. I am immune compromised, I have ZERO immune system and I was not about to hang out in a hospital full of snotty flu humans without some sort of protection. Again, she rolled her eyes. 

     The nurse who has seen me before came and moved me from triage back to a room. The PA came in and looked at my line. She said it didn't look infected but she's also never seen a site with that much drainage. So she called over the ER Doc. I was worried because he's a new one I've never seen before. He took two seconds to look at it and said "something is definitely not right." He ordered several labs, cultures and lots of imaging. 

     First up was an ultra sound of my line. There was a student so it took quite a long time. We were chatting and then she went quiet and pointed to something on the screen. The actual ultra sound tech came over and typed something and then I was taken back to my room. That's when I knew something was wrong. The nurse came in to start a second IV he told me we were going to have to pull this PICC line which was fine with me at the time. They could find a vein to get a second IV they dug, I cussed, we all gave up. 

    The doc finally came in and told me it's confirmed two major blood clots. One was inside the line and wasn't occluding much, but the second was around the outside of the line so very little blood flow was getting past the clot which means the line had to go. Pretty immediately. The international radiologist came in to place a new PICC. He was the one that placed my very first one. He's the bestest. He pulled my old one and went to place the new one. They use an ultra sound to find the vein they are going to put it in. And even with ultra sound he could barely find the veins. That's when my once favorite IR Tech became my least favorite. He told me we had to place the new line WITHOUT lidocaine. He did it super fast but not without me cussing... a lot... like a lot a lot. 

     I was then started on a very high dose antibiotic Vancomyacin. It's biggest side effect was Red Man's Syndrome. Awful. That was over after an hour and we started a second one just to be sure. I was discharged later that night with an oral antibiotic and a very very sore arm. Thankfully I got news that my cultures had all come back negative which means the infection never reached my blood stream! 

     So that was my weekend. It was rough but I made it. 

With Love, 

Elizabeth <3