Unable to Eat

I was feeling good. Really good and beginning to actually function. I was hungry occasionally, tolerating sun, able to accomplish more, losing water weight, less pain, and more energy. I was feeling more confident about my treatment plan and relived that my efforts were paying off. I had visited family to help out with an emergency. Than of course, went back home. The following morning I felt a bit off. I thought I just over did it a little. However, by the following morning it was clear something was wrong once again.

I began out of no where vomiting. To be clear I never vomit with any of my chronic illnesses. I had the runs. Unable to eat and barely able to drink. I ran an extra bag of Saline fluids because it was a Saline day thankfully. I toughed it out all weekend. Finally giving in I went to the Emergency Room only to be “accidentally” sent home. I continued to get worse each day. I began having palpitations, chest pain, all my pain was intolerable by this time, and unable to eat more than two crackers at a time. Due to vomiting I missed all my meds, vitamins, and supplements for about two weeks. On the bright side I’m certain now this plan works.

I have never had to go to the emergency room twice in one week. I was hesitant and frustrated. It was not a smooth trip by any means. In fact, the doctor only agreed to treat me and admit me once my gastros office yelled at her for saying I should just be sent home. I had seen this ER doctor one other time for a mast cell reaction. She didn’t understand it or want to call my doctor so told me I was over reacting. #RareDiseaseStruggle

Finally, I was admitted, as I said. However, no one had much direction on what to do other than offer me food and some encouragement to try to eat. If I had energy it would have been tempting to yell at someone because if all I needed to do was try some food I wouldn’t need to stay in the hospital! They ran basic labs, a stool test, ultra sound, and part of a colonoscopy. They yielded results but nothing that gave them direction for treatment. My body was starving when I was admitted and left. I had half a dozen stones, low blood sugar, a broken cyst, and low vitamin levels. I slept in the beginning about 20 plus hours a day. In perspective I never nap.

This was by far the most frustrating hospital admission I ever had. While waiting for my scope I turned on worship music and just cried from the pain. I had to try to think ahead as most times it took about an hour if I needed anything.  When I got to my hospital room I struggled flushing the toilet from being weak.

Finally I could get in a few bites of soup. So they allowed me to go home because no one was sure what else to do.

So why can’t I eat suddenly? Well, I have of course a well thought out theory. I believe I either got food poisoning or a virus. Due to this I was unable to keep my steroids in so I encountered a mild adrenaline crisis. Additionally, mild flare up of UC, EDS, POTS, and Lupus. To top it all off I have my suspicions that some sort of a mild motility disorder is going on as an overlapping illness with the EDS, Mast cell, and POTS trio.

My days currently are spent with my pets as I try to finish my bachelors degree. I attempt to stimulate appetite and eat extremely small meals. So far I am down about 18 pounds. Outside of that it is mainly resting. There’s not much you want to do when always running on empty.

My goal is to get back in all my meds and supplements because they have been life changing for me. No I have not acquired a magic pill but just another tool to add to my tool box. I follow up with my PCP this week and will be discussing the possibility of a UTI. Furthermore, bring up once again the fact that I am in pain when I eat still. I will see someone who works with my gastro and see if we make any progress. At this time, my doctors are against TPN. However, soon I am getting a PICC line Finally placed for my fluids.

I have 100% seen improvement just to be clear but improvement doesn’t mean I never have set backs. Everyone with an illness has ups and downs. I know in my heart this could have been much worse than it was. I will be working on getting out info on the elements of my plan that help me so much. Additionally keep an eye out soon for a transitioning home from the hospital post.

For when I am weak the Lord is my strength. My provider. My everything. Praise Him in every storm. I am beyond thankful for those He has placed in my life as support. He embraces me when things feel like a nightmare and provide comfort. He has chosen not to heal me but to hold me and I will praise His name forevermore 

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Encouragement

It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

An open letter to the doctor who told me to smile it’s not that bad

An open letter to the doctor who told me to smile it’s not that bad,

Flustered as always you entered the room, immediately questioning the pale blank expression on my face. I told you the pain was horrendous. It was making me dizzy and nauseated. You smiled at me telling me to smile it’s not that bad. It will pass with time. It is moments like these that I wish I could allow you to feel the intensity of the pain. Not to be mean but to allow you to understand that it is real. Furthermore, when I say it is terrible, I am not stretching the truth for sympathy.

You see me for fifteen minutes if that. You merely see me as a patient, perhaps even just a case number. On the other hand, there is much more to my identity than illness. I am trapped inside my body every second of every day. Each day I fabricate a smile. I focus nonstop on the beauty in my life. However, I should be able to be transparent with you. Expressing when I am in excruciating pain without obtaining a foolishly uneducated response. We should be able to discuss my symptoms and pain without me feeling guilty. Additionally, to construct a more efficient treatment plan.

A bit of compassion brings you the extra mile. Sadly,  many medical professionals lack this fundamental quality. Listening to your patients not just hearing them makes a difference.Offer support when we are facing a flare. Smile it’s not that bad or someone you know is worse does not help. Additionally, it is not comforting.