Learning To Be Active Again

"For the moment all discipline seems painful rather than pleasant, but later it reveals the peaceful fruit of righteousness to those who have trained by it."

-Hebrews 12:11

     I am trying to get into the habit of being active again. Not working out, but active. The difference between working out and being active is I am soley trying to get off the couch. I have no outcome goals of losing weight or gaining muscle. I merely just want to move as much as I can. And to say that has been an uphill battle is an understatement. 

     One thing with my Postural Orthostatic Tachycardia Syndrome is that deconditioning makes my symptoms worse. My body literally forgets how to push blood to my brain when I am moving. The more often I move the less my body forgets and the easier it is to do everyday things. When I lay for a month in a hospital bed my body forgets all of that and when I start to move and do life again my autonomic nervous system goes absolute haywire. 

Yep, this is why laundry day
is my least favorite day. 

     One thing I do to be active is go for walks. Small walks, half a mile at most. My heart can barely tolerate that. Some family and I have been walking around the park every once and a while. We also went to look at model homes, which ended up being a bit more of a workout that I anticipated. Damn these three story houses in Vegas. I also walked to my aunt's house for breakfast and back. It's simple yes, but my body is starting to thank me. 

     I have no real plans to begin hard core working out again. Just looking at my heart rate from the little things I already do makes me want to never ever workout again. But I know I'll work my way up to that. It'll take a bit, but I'll get there. I'll slowl

y start to push the limits and work my way up to weight lifting and being buff (JK that's never been the case) again.

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

Off To School And New Adventures

     "Whatever you do work at it with all your heart as working for the Lord not for man" 
-Collossians 3:23

     I started classes this week. I am taking two classes this quarter. Both are fire science classes with one being online and one in person. I went to my first in person class on Tuesday. I am not going to lie, I was extremely nervous. If there was going to be a day my health didn't cooperate, it'd be on a day I had class in a fire station. I am extremely excited to embark on this adventure. Now that I know what is going on inside me and have better control of it I feel more comfortable venturing out. I also figure if something is going to happen I'll be pretty safe in a room full of soon to be firefighters and paramedics. 

     Going to class took a lot of planning. I bought a backpack on Amazon that would fit all my books and Melvin the IV pump. After some modifications (cutting a hole in the side for tubing) the backpack worked out pretty well. And then I had to make sure I had all the emergency supplies (saline & heparin flushes, epi pens, alcohol wipes, green caps, extra batteries, benadryl, and all the other random stuff one would need). Oh how I miss the days where the stressful part of getting ready for class was what to wear. 

     Of course Melvin the IV pump decided to occlude and started beeping incredibly obnoxiously. After a quick dart from class into the hallway I found the kink in the line and fixed it. Melvin was then quiet for the rest of the evening. After class I went to speak with the instructor who was very intrigued. He honestly expected me to walk in with a full on IV pole. So I took Melvin out of my bag and explained how it works and all that jazz. It's always nice getting to educate people and not be judged. 

    One thing I was definitely not expecting with restarting class, was for reality to hit. For years my passion has been in EMS and becoming a paramedic. Now sitting in a room full of people younger than me on their way to paramedic and firefighting I was hit with overwhelming sorrow. The reality that my health has now gotten in the way of my dreams and passion hit me like a ton of bricks. I am mourning the person I used to be. And while I'm excited about the new career goal of 911 dispatching I am still saddened by the fact that I most likely not be able to return to the field. Well, on to new goals and adventures!

With Love,
Elizabeth <3 

Conserving My Spoons

   

"Come to me, all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."

-Matthew 11:28-29

     There is something called "The Spoon Theory". The spoon theory was written by someone with chronic illness as a sort of metaphor. When you are struggling with a chronic and invisible illness you always look fine and put together. But on the inside you're painfully exhausted from fighting a war inside yourself. Every little thing takes so much energy. The spoon theory helps people who don't have a chronic illness understand what that is like. This is also why you may hear people with chronic illness refer to themselves as a "spoonie".

The Basics:
     The basic outline of the spoon theory is every morning you wake up with a certain amount of "spoons" or energy. On a good day you will wake up well rested with a full bank of spoons. On rough days you may not have gotten much sleep, or are still drained from the previous day, that you wake up with less spoons than usual.
     Then, throughout the day everything you do takes a certain amount of spoons from your original count. Showering may take two spoons on a good day, but four spoons on a bad day. Going to work may take five spoons depending on what you do at work. Hanging out with friends may take spoons also because believe it or not that takes energy too. Everything you do effects the amount of spoons you have.
     Extra spoons usually don't roll over to the next day and if you used to many spoons the day before and you're in the negative, it can take days to regain spoons back.

How I Use The Spoon Theory:
     The spoon theory is a great way to explain the amount of energy each task takes to a "normal" person. I use the spoon theory as a reminder. How am I going to prioritize my energy today? What is most important to get done and what can be put on the back burner for another day? I looked at my planner for this week and almost wanted to cry because there was so much planned. I had to stop and prioritize. With classes starting this week some of my more useless projects had to be put to the side. Calling doctor, going to appointments, self care it all takes so much energy. But you know what... I can do it. I will gather my spoons, hike up my big girl boots and get to work. I'm ready to kick some major spoons butt this week, and every week after.

Ways To Help A Spoonie:
     If someone you love is a spoonie and you see them struggling the best thing you can do for them is ask how you can help. A lot of us will not ask for help, we will not tell you we have been out of spoons for weeks, which is usually why our rooms are a mess, why we eat out so often, why taking naps is scheduled into the day. Ask if you can help fold their laundry, do their dishes, bring them a freezer meal so they don't have to kick. For a spoonie the littlest things can mean the most. Help them prioritize or just be there to listen. Every person is different so the best thing to do is ask. Ask what can help.

Being in a constant battle with your own body is exhausting but rewarding all at the same time. Every time I accomplish something it's like a huge momentous win because I know the amount of time, effort, and energy I put into it. What do you use your spoons for?

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 

A Letter To My Nurses

"This is my commandment, that you love one another as I have loved you."

-John 15:12

     To every nurse I have had, thank you. Your hard work and dedication to your patients hasn't gone unnoticed. You have all spent countless hours responding to my call light, checking on me when all the monitors start beeping loudly, priming my IVs and fixing the pumps when I accidentally break them... three times. You have all shared in my triumphs and set backs. You've given me a shoulder to cry on when I just didn't think I could keep going anymore. You helped fight for me when doctors were stupid and trying to move way to fast. You have walked the halls with me and stood by my bedside in prayer. I'm tearing up just thinking about all that you have done for me and all of your other patients. 

     I know your days get long and not all your patients are as awesome as I am. Thank you for not bringing your frustrations with other patients and doctors into my room. For always being positive when you walk through my door even though it was probably difficult for you. I forget that you guys spend as much time on the phone fighting with my doctors and case managers as I do. I appreciate that more than you will ever know. 

     Nurses are the heart beat of the hospital and they don't get enough credit. They are there day in and day out. You have all brought me pudding cups at three in the morning because I was on steroids and starving. You have all brought joy and smiles into otherwise dim ICU rooms. Hospital admissions are hard, they take a toll mentally, but my nurses did everything they could to lessen that. 

     Thank you for all you do. Not just for me, but for all your patients. Your hard work doesn't go unnoticed. 

With Love, 

Elizabeth <3 

Bringing In 2018

“In his heart a man plans his course, but the Lord determines his steps.” 

-Proverbs 16:9

     I rang in the New Year with a raging party from my hospital room. Okay, so maybe it wasn't a "rager". Okay fine, I fell asleep at 9:30 and woke up to my alarm at 11:55, watched the fire works (I have the best view of the strip by the way) and then promptly fell back asleep at 12:15. Even though I wasn't able to bring in the New Year with shots or party hats I still had a pretty great night. After 19 days, yes you read that right, of only being able to take bird bath showers. I was finally able to disconnect from everything and take an actual shower. It. Was. Magical. Being in the hospital for this long really impacts your mental health no matter how positive you are. Being able to take a shower and put on clean clothes last night really gave me the boost I needed to make it through the next few days. 

     The doctor started the discharge paperwork yesterday. But because there is so much that needs to be coordinated to get me home I don't think I'll be getting out today. I'm think the process will probably start tomorrow and then Wednesday or Thursday will be the big day. I've made it this far so I figured what's a couple more days? I'm allowed to get up and walk by myself which has been fantastic. I've been trying to do 10 laps up and down the hallway every hour. You don't realize how much strength you lose when sitting in a hospital bed for this long. So I'm trying to build everything back up while I'm still in here. All the nurses are jealous of my fancy mask. I've been wearing it when I leave the room because I am not about to catch the flu bug while I'm being held hostage here. 

     I'm so thankful God has brought me this far and I am so unbelievably excited to see what he has in store for this new year! This year I'm choosing to find joy in the journey. What ever life is about to throw at me I'm going to find the positive and take it in stride and I hope you are able to do the same. 

With Love, 

Elizabeth <3 

5 Things 2017 Taught Me

"Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!"

-2 Corinthians 5:17  

    

     2017 was most definitely not my year. It wasn't a bad year by any means. It just wasn't my year. I had to move home from Nebraska because I could no longer live on my own. I spent countless days in a hospital bed trying to figure out what was actually wrong with me and how to fix it. I had to stop working at my favorite job and change my life's plan yet again. 2017 was filled with as many up's as it was filled with downs. But I'm not going to lie. I am extremely relieved it's 2018 and I am able to put last year in the past. I'm not one for New Year's resolutions. I personally think New Years resolutions is a thing gyms made up to boost their membership sales once a year. But I do want to take a few minutes to reflect on the things 2017 has taught me. So here goes... 5 things 2017 taught me. 

1) How much friendships really mean to me 

     This year God has put some truly amazing people in my life and strengthened the relationships I already had. My friends went out of their way so much this year to make sure I was happy and healthy. They came to visit me in the hospital, and snuck pizza in. They would text me if they hadn't heard from me in a while. We adopted cats together, saved lives together and got drunk while playing cards against humanity together. Those experiences will be on my heart forever. They don't know what they mean to me. These lovely humans have stuck with me through thick and thin and their friendship just means oh so much to me. 

2) How much I need Jesus 

     My faith has always been strong. But 2017 showed me just how much I needed the hope of Christ. This was a year of many difficult trials and it was always so easy to ask "why me?" or "what did I do to deserve all of this?" It took a lot of focusing to realize that I am all part of God's plan. That he will work everything out in his time according to his plan. I often forgot to praise and thank him when things were going well. But would be quick to ask for something different if the scale shifted in a different direction. 2017 taught me just how much I needed the strength of the Lord whether I wanted it or not. I have grown exponentially stronger in my faith this year. 

3) How to persevere 

     If there's one thing I learned this year it was how to keep pushing on, even when the cards are stacked against you. It felt like 2017 was a never ending string of bad news. News of not being able to return to my EMT job, deciding to move back to Vegas because I couldn't live a normal life on my own, news of a new diagnosis and then another. It was just a string of bad luck. But through all of that I learned how to keep my head up and keep pushing my limits. I learned that when life hands you lemons you throw that shit back and demand some chocolate. Not every scenario in life is going to be picture perfect and that's okay. It's how you handle the good, the bad, and the ugly. 

4) It's okay to have mental breakdowns

     It's perfectly okay to admit defeat and break down in tears. That's normal. This was hard for me to grasp. I don't like breaking down. I feel like it's a sign of weakness. I like feeling like I have it all together even when I don't. I learned this year it's okay to sit in the dark eating ice cream and just having a good cry. But I also learned you can't live there. You have your pity party and you move forward. There will always be those days you want to go lay in a hole and hope no one finds you. But there will always be great days filled with sunshine and hope. You can't let the dark days out number the shiny days. You have to find the balance. I'm still working on finding that balance. It's a hard line to toe. But I'm getting better at it. 

5) Just how incredibly strong I am

     I don't mean to toot my own horn or anything. But this year I realized just how incredibly strong and resilient I am. My body tried countless times to stop breathing and give up but I kept pushing. I kept moving forward. I am so much more stronger this year than I was last year because I had to be. I didn't have a choice. I am so proud of my little body for keeping on. You don't know how strong you actually are until your strength is all you have left. My strength was tested this year; but I won. I won the battle against myself this year and I couldn't be happier. 

What are some of the things 2017 taught you? I pray that 2018 is filled with God's richest blessings for you. That we all come out of 2018 stronger than we go into it. What ever your year has in store for you take it in stride. You can do this! 

With Love, 

Elizabeth <3