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.

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! =]

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.


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.

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.

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

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/


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



My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.


I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.


I have overcome so many challenges in the past few years. I encounter new challenges daily. I battled depression a bit in high school, low self esteem issues, 5 surgery’s, almost falling into a coma, a concussion, and numerous additional health issues. The health issues have been the most steady issue in my life for at least five years now. I have grown as a person through it all developing more patiences.

I honestly thought my Jr year of high school that I had hit rock bottom with my health. I did not yet have a diagnosis. Yet I was encountering what seemed like every symptom under the sun, from pain to seizures, to rashes. I had seen a few doctors who were absolute quacks. I seriously question their degree. One never ran any tests diagnosing me with Fibromyalgia. Then putting me on Cymbalta and he kept upping the dose. I eventually just stopped taking it because I had become so ill from the medication. Though Jr year was difficult, it was not rock bottom with my health.

I love college but my college years have been laced with many challenges. I had pleurisy, a kidney infection, and began passing stones. I got undiagnosed with Lupus and taken off my medication then rediagnosed. Many of you know I was in the hospital last fall due to an allergic reaction to Reclast. Now I am working through a concussion, kidney stones, flare ups, and tapering off steroids. There is never a dull moment.

I have had my share of challenges but I try to be content wit whatever season of life I am in. Of course that is another challenge. I know the Lord has a beautiful purpose for my life and will use my pain to bring him glory. Right now I am working on strengthening my relationship with him. Making that my number one priority as I face new challenges.I know the Lord will provide all I need to get through each day and I am grateful for that.

If you are facing challenges today, I want you to know that you are not alone. Don’t be afraid to reach out and to tell people that you are struggling. You probably don’t want to make a billboard announcing this but telling trust worthy people such as a family member or a friend. Talking to someone makes a huge difference. I also encourage you to bring your burdened heart to the Lord. Open up and let it all out.

It is okay to grieve what you have lost but don’t forget to also be grateful for all that you have. I want you to understand that just because you cannot do something that does not make you less of a person or a failure. You are beautiful, valuable, and precious. You have an amazing purpose in this world. You will make a difference.

Whatever challenges you are facing remember this is only a season in life and it will pass. Sending spoons, hugs, and prayers ❤

My Year Review

As 2014 graciously departs, we reflect on the ways it has transformed our lives.  We thank the year for the all the moments we encountered both those in which overflowed with joy and those drenched in hardships.  We have learned an abundance of lessons, encounter adventures, and have flourished in character. I invite you to join me as I reflect on my year.


Personally, 2014 was discreetly laced with ravishing moments of joy and catastrophe. My health consumed the majority of my time, outside of my academics. One is never truly prepared for a health combat and the after effects. My year began with medical luggage from the previous year. Which included a three month long kidney infection and stones, along with my usual chronic health challenges. Producing a Cytoscopy, I learned I have a fused supernumerary kidney as well as a double collecting system on my right side. (In nonmedical terms this means I have three kidneys and three Ureters.) With persistence the infection cleared up.

In March, my beloved cat Hope passed away. She lost her life to an autoimmune disorder along with internal bleeding. We developed a unique relationship. She helped care for me and provided me with love, support, and encouragement.


Prior to losing Hope, a stray cat wandered into my house where she had kittens. Assisting her emotionally during the forty eight hour birthing session was a unique experience. Kittens and new life in general provides joy as well as hope. Caring for the mother and kittens were excellent therapy for me. After much internal conflict, with the guidance of my parents, I decided to keep the orange kitten who was born second. He had gently wiggled his way into my heart, with no intentions of departing.


From the time I became ill, I have struggled to encounter the right doctor. I encountered many doctors who were disrespectful to me, who did not believe me, who diagnosed and undiagnosed me, and caused stress. These doctors caused the majority of my stress. By brushing my symptoms off, they allowed my body to attack me, thus allowed me to get worse. I was fairly hopeless when I met my current rheumatologist I knew if she was unwilling to help, I would not receive treatment for my Lupus. Just moments before the appointment I saw a Nephrologists. I was told I am mental, there is nothing wrong with me, and the doctor lied to me. That visit left me utterly numb. Praise the Lord my rheumatology appointment went better. A few months after being rediagnoised (for the 8th time) my doctor helped me begin the Benlysta infusion.


Due to complications, I was only able to take nine credits spring semester of 2014. I encountered struggles with the college I attend. Throughout my schooling career I have been told several times that I am not smart and have encountered various academic challenges. For this reason I was beyond shocked when I discovered I had earned a 3.5 GPA for the semester.

In September I was admitted to the hospital due to a life treating allergic reaction to the Osteoporosis medication known as Reclast. Positive and negative things were interweaved into my hospital stay.

The following week, my orange kitten, Tommy got fixed. My mom and I dropped him off, of course I promised to pick him up the following morning. When the phone rang that afternoon, I felt sick to my stomach. The Vet did not sound right as she requested to speak to my mother and didn’t chat with me as she normally would. I digested the fragments of the conversation. My beautiful, energetic kitten was gone. I began to scream and pace. Unable to calm down, unable to understand. My heart broke. We later found out that he has heart disease and a blood clot around his precious heart. Most likely a heart attack stole him.

Recovering from Reclast and keeping up with school work was a chore. Certain symptoms did not improve. I was recommend to cardiology, where we discovered I have POTS.

Though I was consumed with fear I got another kitten shortly after Tommy departed. The Vet and my support system agreed it would benefit my cat Grace and I. We adopted a beautiful curled ear kitten, Saide Rose who is nine months old.

I enjoyed my college courses and succeed beyond my imagination in them. I managed to pull a 4.0 GPA.

I encountered many moments of joy and catastrophe. I am stilling adjusting to life with POTS.  My support system drastically shifted and crumbed in ways. I cherish those who support me and I hold them dear to my heart. I cannot fold into words how grateful I am for the support I do receive. I have been blessed to begin Chronically Hopeful, which includes the Facebook page as well as this blog. I have learned to cherish every moment and to rely on God on a deeper level.  Through God, 2014 has blessed me in many ways.

I would love to hear about your year. Please share in the comments.

Sending New Year’s blessings, hugs, prayer, and spoons. ❤

Min Survival Guide

I apologize for disappearing for over a week, my final week of the semester was more demanding then I initially thought.  The past few days have left me weary in many ways. I am delighted to have sometime off, just in time to enjoy the beauty of the next few days.

I am excited to share a special Christmas season post, featuring a friend of mine. Together we racked our brains to give you a min Holiday Survival guide. I adore the Christmas season and every detail that consumes it. It is a time of beauty, a time to cherish, a time to be thankful, and a time to reflect. Compassion, love, and excitement fill the air. Despite my passion for the Christmas season things have drastically been altered do to my health. I have encounter many obstacles during this season.


Hi! My name is Meena, I’m almost 18 and I also have chronic pain! I have had 6 back surgeries, I have a different back problem now called spondylolisthesis, fibromyalgia, polycystic ovary syndrome. I think that’s it. Ha. I don’t have many “hobbies” lately but I love to read and watch tv.

What’s your favorite Christmas tradition ?

Meena: My favorite Christmas tradition is watching the Christmas movies! My family and I love them.

Victoria: It is nearly impossible for me to select only one tradition that I favor over the others. Various events that I attend with my church family are dear to my heart. I adore the simple traditions with my family, such as baking cookies, decorating the Christmas tree, leaving a tray full of goodies outside for the animals Christmas eve, and decorating in general.

What’s the biggest challenge of being chronically ill during the Holidays?

Meena: The biggest challenge is having the energy to deal with all the activities. Thankfully I don’t have a big family and it’s just my parents, sister and I, so I don’t have to do too much!

Victoria: I have encountered new challenges this Holiday season due to POTS. Currently I am unable to be on my feet for more then 15 minutes at a time, which complicates basically everything. I am also having trouble singing.

How do you save spoons during the Holiday season?

Meena: I really haven’t learned how to save spoons yet. I just recently learned what it was and it’s made me think. I always push myself too much because I don’t want to disappoint anyone or make them upset.

Victoria: I am always on spoon saving mode. Anytime I am going out I prepare the night before. This includes packing my meds, any other medical stuff, getting out my outfit, make up, and deciding how I will do my hair. I try to sit while getting ready. Taking breaks while I am out is helpful as well. I try to adapt any activity I do. If I bake, I sit while preparing things.


What does the Christmas season mean to you?

Meena:  Christmas has always been a time for joy to me. A time to celebrate with family and appreciate what you have in life. I haven’t been so positive these past few years though. Hopefully I can go back to those things.


Victoria: Christmas is a season of giving, of reflecting, and cherishing those around you. To me the season overflows with the beauty of the gift that God so humbly  gave to us. We prepare our hearts to rejoice during this season.

What are your Christmas season survival tips?

Meena: I would definitely say try not to push yourself too much. I’m going to try that. Also, I would definitely have some pain relievers on hand for when you are in pain. Oh, and don’t forget to rest when you can!!

Victoria: Pace yourself, rest enough, and get sleep. Balance every thing. Eat right and take your meds. Prepare yourself for big events. Do not wait till the last minute for anything. Keep stress levels down. Cherish and enjoy every moment.

We want to hear from YOU! Share your holiday survival tips with us in the comments. Be sure to check out Meena’s blog: Beautyandpaindiaries.blogspot.com

12 Days of POTYS Christmas

The Twelve Days of Christmas POTS Gave to Me:

12. Dizzy Spells

11. Aches and Pains

10. Tummy Aches

9. Tachycardia Episodes

8. Hours of Nausea

7. Migraines

6. Arrhythmia’s

5. Hours of Dehydration

4. Hours of Chills

3. Nights of insomnia

2. Palpitation


1. Fainting Spell

Lupus Vs. Cancer Post


My friend Chiara Brooke wrote this post. I truly believe Chiara understands the devastation of both illnesses. She is a strong, beautiful, and carougous fighter.

Please read & share it! Show her support & help us raise awareness!!!!

So many people do not understand how sever Lupus is and how much damage it does to the body.Don’t compare us to Cancer patients our battle is just as difficult. The illnesses progress differently but they are both life altering and can be terminal. Lack of education across the board makes things more challenging for Lupus patients. People should be just as supportive regardless the illness. I have personally been told well if you had Cancer your friends would be more supportive and talk to or visit you. BOTH illnesses are sever and difficult to live with.

“A lot of illness’s suffer from being left in the dark and Lupus is one of them. Except Lupus is forever, it’ll never go away. Not with diet, not with a load of chemotherapy or surgeries, not with medications forever, it’ll always stay the same. See Lupus goes into remission, but it shoots right back at the patient again. Cancer leaves, and only has a chance of coming back, there is no guarantee.”