Cause I Was Born This Way

January the month I was born and is also birth defects awareness month. Although you cannot tell by looking at me, I have a birth defect. I was clueless that I had a birth defect until days before my 20th birthday. A severe kidney infection eventually led me to a cystoscope, also known as a bladder scope. When I woke up, surprise! You were born with a few extra parts, specifically an extra kidney (supernumerary it overlaps my other one) and an extra urethra (they are twisted tightly around one another).

I had never heard of anyone having an extra kidney. Birth defects are more common than the average individual thinks. According to the CDC, “Every 4 ½ minutes, a baby is born with a major birth defect in the United States.” Shockingly, it has been reported that only 10% of birth defects are caused by environmental factors such as drugs, infection, or exposure to radiation. The more reading I have done the more that I have learned that it is common for an individual to be born ‘different’ living typically than in late adolescent to their early 20’s discover either a birth defect or genetic defect. It is vital to highlight, that while prenatal care is essential it is not a guarantee. Furthermore, if a child has a birth defect or genetic defect, it does not mean that the mother did something wrong.

Expectant Mama, please do the best that you can do ensure that your precious baby is healthy. I encourage you to seek medical attention as necessary to keep up with things. In addition, take the vitamins you and the baby needs. Exercise. Furthermore, talk to other Mama to get additional advice. You will have peace of mind knowing you did all you could to contribute to your baby’s health. Commit to Healthy Choices to Help Prevent Birth Defects. There are valuable resources on the internet worth looking at,Learn about the policies impacting children’s health care provides information on children health coverage.

More on a random birth defect note, I also have two extra bones that we are aware of.

Okay, I know I just took a turn by throwing in the genetic defect, but I figured it is an additional topic that doesn’t get nearly enough exposure. “There are more than 6,000 known single-gene disorders, which occur in about 1 out of every 200 births.” The majority of these disorders are considered rare.

I had been told from a young age that I was rare from medical professionals. Additionally, my doctor growing up would always laugh while telling me I was just weird or different. Therefore, I believed I was odd without a reason.Symptoms would be visible at school and my peers would question me, to which I would simply respond that I was different and there was nothing to worry about.

In Kindergarten we were watching a video about bears. They had told us bears can touch their nose with their tongue but people can’t. The teacher paused the video and encouraged everyone to try proving the point the video made. However, I was able to like the bear touch my nose with my tongue. Of course, my new trick was amusing.

Then around middle school, my mom noticed my back was not straight to the point my right arm is about 8 inches longer than my left. I had a lot of strange little things. However, it wasn’t really until recently that I became aware how odd these little corks are.

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I began having bleeding issues when I began my first Remicade. I bleed into the line. I honestly thought the PA did something incorrect. However, it happened again with my second treatment. Then I began bleeding at home. About two weeks ago I found a graphic that talked about bruising with Ehlers- Danlos Syndrome. The light bulb when off. I asked around if an individual could bleed with it and they can.

“Ehlers- Danlos Syndrome is a collection of inherited conditions that fit into a larger group, known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs, and bones. Ehlers-Danlos Syndrome is known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms.”

The main types of EDS are as follows Hypermobility, Classical, Vascular, Kyhoscoliosis, Arthrochalasia, and Dermatosparaxi.

I e-mailed my one doctor who to my surprise agreed that this is an excellent theory to explain the missing puzzle piece. Unfortunately, I won’t know for certain until March, which is when I see the Geneticist.

Some of my EDS symptoms that indicate EDS include, but are not limited to mitral valve prolapse, unstable joints, dislocating joints (at least half a dozen times a day), hyperextending, and easy bruising. There is a multitude of symptoms associated with EDS. In addition, this explains why my POTS is not typical.

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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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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.

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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.

Post Scope

I had my Endo scope a few days ago. In my personal option the scope was boring but it did go well. Well in the sense it was uneventful. Medical testing anxiety is normal, in my option. Up until I spoke with the anesthesiologist, I had zero anxiety which is impressive. Maybe it is because I have had scopes previously or it might have been the simple fact that I was plagued with fatigue. I must say though, when the anesthesiologist told me I might be aware of what was going on and feel some of it, I had a bit of an internal melt down. Thankfully, I do not recall any of the procedure. Of course I woke up in pain.Waking up from anesthesia is always painful for me, but I think that is normal.

Despite being on a handful of anti inflammatories I have inflammation in my stomach.  The doctor informed me that it was caused by Lupus. I did get pictures of inside of my stomach, similarly to the pictures I received of my colon.  I know this grosses most people out, but I find it interesting. I enjoy learning. It is just odd to a degree that those pictures are my insides. It’s not someone eases, it’s not just a text book reading or article this is mine.

The doctor did take three biopsy’s. I can feel where he took them, it is extremely weird.

In perspective I am doing great post endo scope. No new symptoms.

Throw Back Thursday

January is birth defects prevention month, it should also be birth defect awareness month. Birth defects are one of those things people don’t talk about. Many view people with them as outcasts. It is true that some defects are due to carelessness of the expectant mother, however there are many times that there is no way to prevent a birth defect. The cause of birth defects goes unknown for many. In fact some people live a good portion of their lives without ever knowing that they have an internal birth defect. I am one of those people. I never suspected that I had a birth defect and neither did my parents. It was an accident that I found out.

Last January, I went to have cystoscopy. In simple terms this means I had a bladder scope. There are a number of reasons cystoscopy are preformed, for example to look for interstitial cystitis, other bladder disorders, or kidney stones. Generally this is a short scope. Many people remain awake for it. I insisted on being put to sleep and was informed later on that it was the right descion. Right before my cystoscopy I met the doctor who would be preforming the scope on me. We discussed my symptoms and pain. He decided that it would be beneficial to look in my kidneys to see if I had additional stones. As we made our way into the OR, the doctor instructed one of the nurses to clear the schedule for the remained of the morning because my scope would take a while.

My scope took nearly an hour. I woke up in extreme pain. For me the cystoscopy was by far the most painful scope I have ever had done. The nurse begged me to go back to sleep, but I was in too much pain to rest. In addition I needed to use the bathroom. The nurse insisted that I didn’t need to go and argued with me for a while before going to get my mom. Of course I was sleepy when she came back. I could tell by the look on her face that they had found something during the cystoscopy. Fear and joy leaped within me. Joy that someone found something. Fear of what it could be. She told me that I had three kidneys and three ureters.( The doctor was so excited because he has never seen this before). Then explained that I had a stent in my left ureter because they had seen something on that side. I was in awe that I made it to merely a few days before my twentieth birthday and never knew that I had three kidneys.

The medical term for this is a fused Supernumerary Kidney. The kidneys on my right side are fused together which is why no one noticed I had an extra. My right ureters are twisted together. Less than 100 cases are documented worldwide currently. If it is caught during childhood it is removed. Many times the extra kidney begins giving the person trouble during their late teens to early twenties. No research is being done about supernumerary kidneys because it is so rare. Most doctors have minimal knowledge about it.

Nearly everyone who hears that I have an extra kidney think it is cool and ask, “Can you donate the extra one?” Sadly I can’t. No one wants my extra one, it would just give more issues to them. My extra one might be the cause to some of my kidney issues as well as some of my abdominal pain. It does not function a 100%.

The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.

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.

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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.

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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.

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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.

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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. ❤