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. ❤

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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.

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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.

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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.

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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.

 

Emotional Health: IBD

Personally, I don’t like the words mental health. I feel like it has a negative perspective in society and is associated with more or less being crazy. I prefer the term emotional health, yes I am aware there isn’t much difference but that’s what I call it. Anyways. This post isn’t about which term is better. Today should have been yesterday’s post but the day slipped away from me. We are talking about emotions and IBD. There are dozens of aspects of emotions with chronic illness in general. I am going to just survey this topic in this post and attempt to keep it short.

Everyone is unique in their illness and emotional health. When a person gets emotional sometimes, the medical field blames everything on the emotions not acknowledging it’s a balance. From a clinical point of view, personally, I have low scale anxiety. I had clinical depression as an adolescent, but do not right now. That does not mean I don’t feel depressed at times. It means it isn’t a chronic aspect of my battle that impacts daily life. Most medical professionals cannot understand why I am not mentally unstable, but I say go with it.

Medications impact emotional health as well. Last year, I went through a season where I had no emotions. At least that’s what it felt like. I had went into survival mode than high doses of Prednisone and my emotions went on vacation.  In addition, medication can change how you look which in turn impacts your emotional state.

Even though I am not diagnosed with severe emotional disorders, it doesn’t make the emotions easier to cope with. There are countless emotions that come with medications. Tons of stress and frustration from doctors. The isolation of illness. Not to mention the anxiety that is through the roof. Anxiety with where are the bathrooms. Will I have an accident? Will I be alone forever? How am I going to work? Will it ever get better?Logically I can answer these questions but during an anxiety attack logic only gets you so far.

Learning how to cope is a journey with emotional and physical health. Talk with someone you trust or write. Releasing the emotions is helpful. Being creative is good for emotional health. Many people draw, color, or listen to music. I am a fan of online support groups as well as raising awareness for my illnesses. The Crohn’s and Colitis Foundation also has helpful resources for mental health. In addition, you can check out this Patients Discuss Impact of IBD on Mental Health video. Lastly, a big key to my stability is my faith. It does not necessarily cure an emotional disorder but it makes it more manageable.

 

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The Pain:IBD

The topic today is pain with IBD. I don’t like talking about my pain. On the other hand, it is a part of raising awareness. Physical pain is a part of my daily life. It has improved with medication. I was taught the pain scale at a young age. Zero being no pain at all and ten being the worse pain of your life which is usually equivalent to giving birth. On a good day, it is a five or six on the pain scale. An average day is an eight.

Simple things like eating can throw me into a flare. A bad day it’s a ten hands down. When it is that intense I know there is a 50% chance it is a flare and a 50 % chance that I am in big trouble (shutting down, a tear in the intestine, or something collapsed). The pain at times is so intense it sends me to my knees doubled over screaming bloody murder. Fighting back tears, I attempt to smile and go back to whatever I was doing before the wave of intense pain hit. The intensity is beyond words.

I’ve adjusted to the pain to a degree. However, there are times that the symptoms are nerve racking and the pain is too much to deal with. It is challenging being a college student and learning how to navigate daily life while being chronically ill. At times it feels as though the pain just becomes more intense. Each medication you try you pray is the miracle medication, your breakthrough medication so that you can go back to living even to a degree.

Coping with intense pain is a challenge. An individual needs to learn when it is time to call the doctor or head to the ER.  I have the habit of walking around the house a lot when the pain levels are high. Reading fiction, if I can focus really assists in coping with the pain. In addition, I talk with my mom or my friends who are chronically ill. Sometimes I journal prayers or just write. I also clean while listening to sermons or Youtube videos. I don’t sit still very well. Once in a while I will cave and watch television. I don’t love television. Personally, if I spend too much time watching it I feel like I have wasted time. I also go on Pinterest if it is late at night..

How do you cope with physical pain?

Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

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That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

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Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

It’s a Spoonie World

Sometimes with being sick, I feel like I live in a different world. A world consumed with pills, doctors, and all things medical. The real world is a distant fairy tale. Attempting to budget time according to pain, fatigue, and symptoms. Even the simplest task must be carefully planned out. Planning is necessary but can be destroyed in an instant.

In this alternative universe, my health is the dictator. Rebelling would only make things more difficult. Taped and chained, the wall crumbled, oh the pain.

Occasionally, I try to sneak out to visit the real world, to be normal. These short visits never go as planned. Rebellious excitement floods my veins as I begin talking to someone. But Conversations quickly die when you are from another universe. The spoons are sucked out of my grip. It becomes easier to sit back and observe. Blending in is difficult. As time waltzes away, I realize how different those not citizens of the spoonie world function.

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The spoonie world isn’t all bad, it is filled with the most inspiring people you can encounter.Each stroy, is more beautiful and devastating than the last. Our problems are deeper than what most people are age deal with such as heartbreaks, parties, all-nighters, and peer pressure. We deal with the lastest hospitalization, biopsies, surgeries, and medical testing. Like normal college kids, we cry together and laugh together. We adjust to the Spoonie world challenges and beauty alike becoming stronger daily.

Hospital Part 2

Part two more or less of my hospital stay. I apologize it is all over the place.

I had two strange nose bleeds. I have had more nose bleeds in my life than I can count but these were different. My second one happen 4 am. I got blood everywhere in my bathroom, it poured out uncontrollably. I am anemic currently so I feel that it is related.

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I had a repeat colonoscopy last Tuesday.  The picture above is my special drink. I usually do Miralax for colonoscopies. I found this solution to work quicker, be less painful, and taste somewhat better. I did get dizzy.  This one is called go lightly. I got the solution late in the day and was still nauseated so my nurse told me to drink as much as I could without making myself sick. I got more than half down.

I had been given my insomnia medication the night before the scope. I usually don’t take it at home and I had forgotten why until I had an emotional meltdown directly after the scope. I didn’t get much sleep the night before and woke up too soon after the scope. I wasn’t crying because my colon has healed somewhat. I was crying because I was scared of not being taken seriously and being taped in this abdominal flare up. I know the pain levels need to come down in order for me to function better. Apparently not everyone understands that humans have emotions. Someone had told my mom that I need a psychiatrist. I get extremely irritated when people dismiss me or downplay my pain and symptoms.

I believe that crying can be helpful in coping with an illness and life in general. Medication can also play into emotions. I have had people tell me I need a better attitude when I am doubling over in pain at the doctors office. No one smiles 24/7.

The IV fluids were my best friend. It makes a huge difference. I ran low-grade fevers off and on as well.

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I was discharged late on the 6th. I have only been home a few days, my body is still trying to adjust. Last night I wasn’t able to sleep. I started having IBS/IBD symptoms 4 am. Therefore, Saturday was  difficult. I had a lot of nausea. I couldn’t take any of my meds until 1 pm. The doctor had been talking about readmitting me, but I don’t feel that is necessary at this point.

I see a newish Gastro Friday. We are hopeful that she will be able to help. I am still randomly bruising and bleeding. I am able to eat some. Grateful for the small improvements. Thank you to everyone who prayed for me when I was in the hospital.