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.

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.