To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

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Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

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!

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

The Problem of the Semester

Introducing the problem of the semester. Each semester I seem to run into at least one big obstacle with my health. Lupus doesn’t think college is eventful enough.

After coming home from the hospital, I collapsed, at least, four times from POTS landing on my right hip. Needless to say, I was experiencing hip pain. It was determined that I didn’t break anything. Even so, the pain was getting worse. I knew there was something wrong.The concern became that it was possible my body wasn’t providing enough blood to the bones in my hip. That could cause a bone or tissue to die. My doctor sent me for an MRI which revealed a growth along with some torn cartilage. Now I am waiting to see a specialist to see what the next step will be. Waiting is one of the most challenging things. Not being able to do much for the pain and not knowing what they will suggest to do for the issue at hand.

With Lupus, there is hardly ever a dull moment. I think about my friends with Lupus and everything they go through because of this illness. It can feel like you are just overcoming one obstacle and boom there is another. At times, it is difficult to process everything that is happening. We get use to dealing with certain things like blood work, but additional obstacles don’t become easy to deal with.It threatens our Lupus normal and can cause stress. This is one reason it is vital to have a support system not just of encouraging people but also of others who are dealing with chronic illness. Those  of us with chronic illness have a different perspective and provide a different element of support to one another.

At times, people tell us how we should react to an obstacle or tell us the ‘magic’ cure. If you are also facing a health obstacle it’s okay to feel emotional or to feel fine. Your emotions are not wrong. You have enough strength for whatever you are going through. Wishing you all a wonderful afternoon. 🙂

 

Hospital Vacation

I have decided to share some aspects of my hospital visit. I am going to split this into a few different posts. Excuse my scattered brain if I seem to jump around.

Although winter break is finally in our mists as college students, chronic illness does not surrender momentary in search of a time of rejuvenation. My chronic illnesses thought it needed to make this point clear.

I am in a constant battle with the Prednisone taper. Finally down to five mg; it’s a love-hate tug a war. I have been steadily getting worse for about two weeks as of last Saturday. Attempting each day to tough it out and make it through the day as I counted the days until my doctor’s appointment.

Not much was different about last Saturday. I was able to eat a tiny bit of this and that which was a victory for me. Even so, my appetite decreased going into the early afternoon. I didn’t want to drink not to mention the thick fatigue fog consuming me along with the pain.

Spoonies know you avoid the ER after any holiday if possible. My mom and I thought it was best to go to make sure my liver enzymes didn’t spike. After two hours of uncomfortably waiting, I got a hallway ER bed, talk about the lack of privacy.

Living with a chronic illness, you learn to tune out some of the pain in order to function. I was in a lot of pain. I didn’t register the intensity of the pain until everyone began pressing on my stomach. (Tummy ache? Let’s press on it… Yea doc that makes it worse). Things ran slow. They ordered typical blood work along with a CT and X-Ray.

As someone rushed passed my bed I was handed labs and reports. I scanned them, nothing alarming…yet. The doctor passed me shortly mumbling something about going upstarts, which made no sense to me. The doctor wanted me to see a surgeon to be on the safe side. They admitted me for pain management and observation.

Of course, over the course of my stay, a sea of doctors flooded my room. Some helpful others just frustrating. Even with a diagnosis, I am still considered a complex case, a medical mystery.

The nurses at the hospital I go to are excellent. The nurses are one of the reason, I love this hospital. They offer encouragement, assistance, and support. I think Spoonies make friends with nurses fairly easily. While I was waiting to be discharged I was hanging out with my nurse.

In addition, I had a patient liaison. Having him on my case, in addition, proved a lot of comfort. I had never heard of a patient liaison. This is an advocate, they can provide information,  conversation, and support.

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I slept a lot in the hospital. I  was extremely grateful to have a private room and bathroom.

The Spoonie Life:An Update

It feels like the semester that will never end. My last final is this Tuesday. My symptoms have been flaring. Brain fog is heavy. I frequently forget what I am doing. Or just become confused for a few seconds. At times, my thinking is slower with pain or fevers. It is hard to let go of perfection; to accept doing my best with school. I know I have put in a lot of effort.

Frustration with the spoonie life, specifically with doctors is setting in…again. At times, I feel like I am screaming yet no one  can hear me. I present with scary symptoms. Everyone agrees I am sick yet no one will help me. Sorry Doc, feel better doesn’t cut it. I know I am not a typical case, it is going to take some extra work and I am sorry, but it is out of my control. I would love to be a cookie cutter patient, but that is not my reality.

I have three doctors with three different options and no real plan currently. Last week I had several frustrating conversations. The ‘head’ doctor for my abdominal issues called me yet he was not quiet long enough for me to speak. He wanted to do a scope. I hesitated. I have had over half a dozen scopes in a few short years. I had questions. I firmly believe as a patient you should have a say in what medical testing you have and you should have all the information up front. I explained to my other two doctors that if I absolutely need a scope that is fine, after Christmas. Monday, the one doctor told me it is unsafe to do a scope due to my pain (I don’t think that is a legit reason. I’ve had scopes while in more pain). For now, I have a CT with barium and contrast in a few days, nothing fancy. I am praying it will give them what they want in order to move forward with treatment.

Sometimes, I want to jump off of steroids as fast as I can, like ripping off a band-aid. I’d like to think it would make things simpler. But my body freaks out and that makes me nervous. I want to be off. No one has a plan of action or anything in the event that my liver go nuts and my body begins to shut down…again. Being stuck is frustrating.

POTS

I am an expert at passing out, it’s a skill that not many people have. Then again most people do not need this skill. I can recall the seconds leading up to each time I passed out vividly. I have passed out well over a dozen times.  I know when it is going to happen. The warning sings are always the same first I feel dizzy, then my hearing fades, weakness increases steadily, then the vision leaves, and boom I pass out. Once the passing out shuffle begins I spring into action. Either telling whoever is around or by getting to the floor as quickly as possible. Usually someone says my name a few times and I’m back. No biggie. Extremely tiring but not tragic.

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October is Dysautonomia Awareness Month.  Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. What in the world is it? “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” Dysautonomia is not rare, at all, it is just rarely diagnosed. Many people live undiagnosed or misdiagnosed.

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The tilt table test is used to diagnosis POTS. Web MD gives this explination of the test: “The test involves lying quietly on a bed and being tilted at different angles (30 to 60 degrees) for a period of time while various machines monitor your blood pressure, electrical impulses in your heart, and your oxygen level.

The head-up tilt table test usually takes one to two hours to complete. However, that may vary depending on the changes observed in your blood pressure and heart rate and the symptoms you experience during the test. Before the test begins, a nurse will help you get ready. The nurse will start an IV (intravenous) line. This is so the doctors and nurses may give you medications and fluids during the procedure if necessary.You will be awake during the test. You will be asked to lie quietly and keep your legs still.”

From my experience the tilt table test made me sick but did not increase my pain. Overall I found the test extremely boring. I was only up a few minutes before I began passing out. They laid me down and pumped me up with saline with extra sodium. The tilt table test does need to be done in the morning.

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The most common types of Dysautonomia are: Postural Orthostatic Tachycardia Syndrome, Neurally Mediated Syncope, and Multiple System Atrophy.  POTS can develop in the adolescent years and some out grow it. In other cases it is a secondary illness and is a chronic condition. Some POTS patients are misdiagnosed with an anxiety disorder. POTS is not an anxiety disorder nor is it cause by one. The role anxiety plays is a symptom. I received my POTS diagnosis almost a year ago. The possibility of me having POTS was mentioned during my Reclast hospital vacation. I had heard of the syndrome, however my knowledge was extremely limited. Of course I researched POTS before my diagnosis was set in stone. Once I learned more about POTS I knew I had it. It was something I lived with, I just had to get the doctors as usual to see what I already knew. My doctor ran the tilt table test. My POTS presents many obstacles daily. It is an incontinence illness.

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Though I like the doctor who is in charge of managing my POTS, most times he is unsure how to help. POTS can be challenging to treat. There is nothing my doctor can currently do other then prescribe a beta blocker for high heart rate. Of course, he advises the normal things such as eat sodium, wear compression stockings, pace yourself, ect…

It has almost been a year sense my official diagnosis. My POTS has improved greatly. This is mostly because of Prednisone. One of the biggest challenges I live with currently due to POTS is various organs not getting enough blood. Again, no one really knows how to help this issue in my body. My balance is off still. Right now it’s great I only fall into walls instead of completely collapsing. Collapsing out of no where is inconvenient and unsafe.

Normal activities are challenging for people with POTS. Being up right, being on their feet for a few minutes, and showering are difficult and sometimes dangerous things.

I watched something on POTS where a doctor recommended anyone with  POTS to wear a helmet in the shower. Comical. And impractical. How would you propose washing your hair with a helmet. Yes, falling in the shower is unsafe but a helmet is not the best solution.

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A lot more research needs to be done in order for patients to receive better treatments. That is one reason raising awareness for POTS and other chronic illnesses is essential. Thank you for reading about my POTS journey. I hope it can help someone or that someone can learn something from this post.

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30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: My main illness is Lupus. I have autoimmune and an additional half dozen.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: Childhood.

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4. The biggest adjustment I’ve had to make is: Not being able to be in the sun not being able to be on my feet for to long.
5. Most people assume: That I’m healthy, faking, or lazy. That I don’t do anything productive on a regular day.
6. The hardest part about mornings are: Being dehydrated. Dizzy spells.
7. My favorite medical TV show is: Diagnosis Me
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Getting to sleep & saying asleep.
10. Each day I take __ pills & vitamins. (No rude comments, please) Currently about 15. I also do chemo, self-injections, once a week. Please no rude comments, but feel free to privately ask me about my treatment plan! =]

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11. Regarding alternative treatments I: I have tried a lot of different treatments. Currently in regards to alternative treatments I maintain a healthy diet, aroma therapy, and keep stress levels down. A lot of ‘natural’ treatments can be risky for my combination of illnesses.
12. If I had to choose between an invisible illness or visible I would choose: I don’t prefer one over the other. Most days I my illnesses are 110% invisible. I have worn braces or used walking devices and some people are just as judgmental. You’re too young to use that.
13. Regarding working and career: It is difficult that I cannot work right now. I am a full time college student and patient.

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14. People would be surprised to know: I am busy despite my illness. I try to be transparent about it in hopes that others can open up about their illness. In no way am I looking for sympathy I want to encourage, support, and educate others.
15. The hardest thing to accept about my new reality has been: I need to rest and slow down.
16. Something I never thought I could do with my illness that I did was: Achieve a 4.0 GPA.

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17. The commercials about my illness: Ha. They are great… now only if the TV would play them…
18. Something I really miss doing since I was diagnosed is: I miss being normal. Doing normal activities like going out with friends, mission work, and being outside especially in the sun.
19. It was really hard to have to give up: Doing mission work and being outdoors for extended periods of time (AKA on a sunny day more than 5-10 minutes)
20. A new hobby I have taken up since my diagnosis is: Running a Facebook page, a blog, coloring, and crocheting.
21. If I could have one day of feeling normal again I would: Something outdoors, maybe visit the ocean…One day mission trip? So many possibilities!
22. My illness has taught me: To cherish every moment.

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23. Want to know a secret? One thing people say that gets under my skin is: You don’t look sick.
24. But I love it when people: Listen. And are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: So many to choose from! I love, “The Lord will Fight for you, you need only to be still” Exodus 14:14

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26. When someone is diagnosed I’d like to tell them: To educate themselves. Allow yourself to grieve and to adjust to Lupus. Learning to pace yourself is key. You will inspire so many people!
27. Something that has surprised me about living with an illness is: How rude some people are, especially those in the medical field.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me and being supportive. Don’t under estimate the power of a simple short conversation or a gentle hug.
29. I’m involved with Invisible Illness Weekbecause: I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible. https://chronicallyhopeful2014.wordpress.com/2015/09/08/invisible-illness-awareness-week/

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 30. The fact that you read this list makes me feel: Excited.

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