Friday, December 15, 2017

When Santa Wasn't Real

I was in the fifth grade when life as I knew it changed. I learned that Santa Claus, the man in the red suit who makes every Christmas dream come true, was a farce. He was never real. Suddenly, my entire existence was a lie. What about the Easter bunny? What about the tooth fairy? It was too much for my eleven year old soul to bear.

I found trying to imagine Christmas without good ol' Sant Nick was impossible. Christmas could not exist. And from that day forward, I swore I would not tell my future children about the fictional characters that often obscure the true meaning of the holiday season—Jesus!


Still, Santa and Jesus are similar. Why is this? After pondering the issue, it is the secular world's way of distracting from Jesus's glory with materialism. The diversion is so subtle at first that even Christians become just as wrapped up in the concept of Santa as the fancy gifts competed with the perfect red bow. Despite the striking comparisons, Santa Claus is not Jesus. Jesus is always one-up and manages to remind us why Christmas is dedicated to Him anyways.

Gift Giving

Residing in the North Pole, elves are Santa's gift giving sidekicks. They prepare year round to construct and gather the toys to fulfill the wish lists of little girls and boys. On Christmas Day, children awake wide eyed with excitement. Santa is acclaimed as the master gift-giver. The gifts given by friends and family cannot compete for his title.

Jesus, however, does not generously bring bikes and cellphones on Christmas. His gift is better, lasting an entire lifetime.
For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord. - Romans 6:23, NIV
Such materialism conceals the best gift that he continues to give us—our lives!

All Knowing

Naughty or nice? Santa is perceived to know everything. From thousands of miles away, Santa is aware of which children are behaved the majority of the year from those that are not. Lie to mom? He knows. Didn't eat your vegetables? He knows that too. And as a parent's desperate plea for pristine conduct, it is threatened that Santa will deliver coal instead of the wish-list approved gifts come Christmas.

Omniscience is a confusing concept. While Jesus posses human qualities, He is also part of the all-knowing, omniscient trinity.
All things have been handed over to Me by My Father; and no one knows the Son except the Father; nor does anyone know the Father except the Son, and anyone to whom the Son wills to reveal Him. - Matthew 11:27, NIV
He understands our every thought, has an accurate plan of our future, and His knowledge exceeds the good or bad actions that have already occurred. He knows

Doing the Impossible 

Soot stains cover the white, fluffy beard of the man who squeezes his chubby body through a chimney. Shimmying down a chimney is not the sole impossibility Santa Claus undertakes. For houses that lack his conventional path, he silently sneaks in-and-out the back door. Children are led to believe that he travels the entire globe in a 12 hour span on Christmas Eve, delivering extra holiday joy to all of the families with kids. It is unconceivable, yet he makes it happen.

Sorry Santa, but more significant phenomenas are attributed to Jesus. There are accounts of healings, rising after being considered dead...
"If you can?" said Jesus.  "Everything is possible for one who believes.” - Mark 9:23, NIV
These multiple miracles were 12 months of the year, 7 days of the week...not only December 24-25 for the Christmas holiday.

Judgement and Mercy 

The potential adolescent offenses are vast. Regardless of the empty warnings, rarely do you hear about naughty children actually receiving coal from Santa as their Christmas gifts. Massive temper tantrums, sibling rivalry, and disobeying parents are forgiven with a plethora of presents under the Christmas tree.

Adult or child, Jesus paid the ultimate price for our wrongs. His mercy is unceasing.
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead. - 1 Peter 1:3, NIV

Santa can add an element of fun into the holiday. Although I was raised in a wonderful Christian home, Santa was included in our Christmas celebrations. My family went the whole nine yards— writing letters for Santa, leaving him milk and cookies, and throwing reindeer food into the yard on Christmas Eve. It really got me thinking about the extent society goes into the silly game that inadvertently distracts from Christ.

When I found out the truth about Santa Claus later in childhood, I was crushed, but I should not have been because that is not what Christmas is about.


Monday, December 4, 2017

Safe Christmas Gifts For Mast Cell Disease and Allergic Conditions

ThThere are snowmen and stockings, ornaments in red and green, and sparkling lights on every tree. The holiday season is upon us. Christmas is a time for giving. The elves spend all year preparing, but still, Santa lacks gift ideas for some of his most special recipients.


"I don't know what to get you when you're allergic to everything," practically summarizes the bane of my existence. Chronic illness, especially mast cell diseases, imposes restrictions on the type of gifts received. Whether its complications from scented products, diet changes, or chemicals sensitivities, giving and receiving is frustrating for both parties. Fortunately, with a little consideration and lots of love, there are many options to give your loved ones with an allergic condition.

  • Allergic to bath sets? Try non-scented products. 


Fragrances are undoubtedly the quickest way to take me down. I am sure it is the same for others diagnosed with Mast Cell Disease or allergic medical conditions. No 'Warm Vanilla Sugar' this year! Rather than the typical $5.00 bath sets that most regift, non-scented products are the way to go. 

There are a range of Free & Clear soaps, shampoos, and conditioners that are a household staple for allergic patients. I bet your loved one uses them, and you will definitely not unwrap it as a forgetful sentiment of kindness next Christmas. 
  • Allergic to cinnamon candles? Try a Vogmask. 


It was a woeful day when I realized I could tolerate the smell of Christmas no longer. The cinnamon-y aroma once aroused a sense of bliss. That is, until that holiday happiness was extinguished by the frightening sensation of my throat constricting. Bah humbug. 

With dangerous symptoms triggered by chemicals scents, masks are lifesavers. There is rarely a lack of need there, as the masks lose effectiveness around 3 months of use. Buying a replacement is thoughtful to prevent a case of the Christmas blues. 

  • Allergic to hot cocoa or coffee? Try a BPA/PVC/Latex Free thermos/bottle. 


Chocolate and coffee are up there in histamine levels. Although the gift is intended to be practical (because who does not love hot beverages in the cooler season?), I know that I would not be thanking anybody for the stroke-like episode I would go into if I unwrapped a mug with hot chocolate and its prepared toppings.

As a safer substitute, purchase a safe bottle to store water. Kleen Kanteen is awesome because it is free of a variety of plastic triggers that inevitably lead to cross contaminating a safe drink. 

  • Allergic to certain clothing fabrics? Try gift cards. 


Being allergic to clothing almost sounds like a joke. However, those who suffer from such a misfortunate are not laughing. There are clothing fabrics that do lead to allergic reactions for the extremely sensitive. Unless super involved in the loved ones daily life, it is likely you are unfamiliar with the specifics. Gifts cards completely bypass that potential issue. 

  • Allergic to paper in books? Try Kindle books. 


Each Mast Cell Disease patient is different. I do not experience a reaction from all books. The books with thicker, white paper do cause symptoms. A Kindle is a pricey gift for the typical friend, but chances are, your allergic loved one probably already has a reading tablet. Gift cards to purchase books are helpful. To make the gift more personal, accompany it with a list of book suggestions. 

  • Miscellaneous Gift Ideas


     1. Fuzzy Socks

A big, elaborate gift is not necessary. It is the thought that counts! Fuzzy socks are an ideal sidekick to sick time spent in bed. 

     2. DVD Sets

And with increased time spent in bed or on the couch, TV is a substitute for contact with the real world. My list of television shows is quite extensive. Friends with chronic illness can go on about favorite shows forever. Sometimes, rewatching old favorites is amusing. Box sets allow that to easily be done! 

    3. Craft/Hobby Kit

Learning a new craft is perfect for the moments TV does not suffice. 

   4.  Board Games

Games with family and friends are so so special when feeling up to it. As a bonus, they usually do not cause reactions - just let them briefly air out to off gas the chemicals from the plastic pieces and the gift is good to go!  

   5. Key Chains

Key chains are another simple gift idea with a low reaction possibility. I absolutely love to put keychains on the backpack that carries my infusions. They are also an accessory to the key for my CADD infusion pump. 

   6. Feeding Tube Pads

Not all patients with allergies are tube fed, but some are. If your loved one is a tubie, tube pads are a cute alternative to plain gauze to use as a feeding tube dressing. The price of a set is around $20.00-$25.00. My favorite shops for tube pads are: MyTubiesCloset, Milostones, and Julias G-Tube Pads

   7. Music 

CDs, iTunes...music is universal. It is comforting when really struggling with illness or other life matters. 

   8. Subscription Box Trial 

Monthly subscriptions are a unique surprise. Cater it towards your loved ones interests. 

   9. Blanket 

The sick and healthy alike have use for a blanket. The gift is sentimental, as well as practical. I cherish blankets that are given to me and I use them almost daily! 

To a patient with mast Cell Disease and allergic medical conditions, there is nothing more special than knowing our friends and family care enough to consider our safety. Regardless of the gift, abiding by the seemingly crazy stipulations of the disease is the perfect Merry Christmas! 


Monday, November 27, 2017

The Blessing of Chronic Illness In A Relationship

Anaphylactic reactions, screaming fits of pain, feeding tube placements, and emergency flights via airplane. Septic delirium, dates gone horribly wrong, unsightly fainting spells, an ambulance singing a song... Partners of the chronically ill see it all.

Five years ago, my boyfriend asked for my parents' permission to begin our relationship. I am sure they knew it was coming, as I had recently turned 16 and was not allowed to go out on a date before then. They were just surprised by the face-to-face inquiry atypical of teenage boys in current society. I was much healthier at that time, but before agreeing, he needed to understand my illness. They suggested he pray about his decision.

A few weeks ago, my boyfriend, now fiancé, asked my mother and father for my hand in marriage. And last Saturday he popped the big question. Of course, I said, "YES!" We are elated! The proposal was a very special moment we will forever treasure.

It will likely be a lengthier engagement, long enough for him to finish nursing school and land a job with decent insurance. Similar to how my chronic illness quickly interfered with teenage invincibility, it isolates us from the life of the average soon-to-be newly weds, living off of ramen noodles and love. Extra planning is necessary.

With an impending marriage, it is a "YES!" to love, but also to medications, feeding tube and central line supplies, and formulas and infusions. My illness and I are a package deal. Although no warning at the beginning of the relationship could have prepared him for my health declining to its present state, it takes a special person to willingly surmount the obstacle that is chronic illness.


While chronic illness undoubtedly causes its fair share of complications, it lends its strengths too. Each trial is an opportunity for growth as an individual and as a couple. 

Acceptance of Change

Three months into the relationship, I got my first NJ feeding tube. Being 16, I was absolutely mortified to have a tube taped to my face. My boyfriend was not there for that particular tube placement, but I had a complete meltdown when I saw him afterwards. I refused to go on a date out in public. He lovingly convinced me otherwise and dealt with the rare occurrences of confrontation on my behalf until I became comfortable enough to do on my own. My stubbornness was obviously showing.

Later, I finally had the surgery for a permanent GJ feeding tube. Nurses wheeled the stretcher to the room where I greeted him and my parents with wrenching dry heaves and a post op abscess near the new contraption taking over my abdomen. Isn't that attractive? Adjusting to the tube was an ever changing process, but he learned alongside of me and I never felt unaccepted.

WATCH Spooky Feeding Tube Experiences (NG/NJ/GJ).

I have been ill to varying degrees the entire relationship. Despite durations of mild to extreme flaring, I have had remission spells. I was able to ditch the tubes and lines, eat and survive on oral medications, and stick to a consistent workout regimen for almost a year.

Ironically, the brief stints of health were not without challenges. Chronic illness incites change in a person that is especially significant at the initial onset of symptoms.

In a relationship, it is important to change at equal rates to mature and advance together. When yo-yo-ing between healthy and sick, changes are only emphasized and increased. With effort, it can better the relationship.

Through chronic illness, you learn to accept your partner through the good, the bad, and the ugly.

Sacrifice

The sci-fi adventure or the whirlwind romance chick flick? Healthy couples compromise on what movie to catch in theaters Friday evening. Contrarily, the couple with one partner who is chronically ill must concede to choosing the emergency room over the planned movie date.

If you're new here, you will know Mast Cell Activation Syndrome is the diagnosis that impacts me the most, but its symptoms were not always so prominent. Early on in the relationship, I did not used to react to the slightest chemical or food exposure. In fact, reacting to fragrances was inconceivable to us both. Unfortunately, a medication triggered my first severe reaction at the age of 17. What started as brief discomfort metamorphisized into rapid response calls in the hospital.

Next, it started a cascade of crazy sensitivities—food ingestion, airborne food proteins, perfume, cologne, laundry detergent, shampoo, diesel fuel, cleaning chemicals, toothpaste...you name it. I even became allergic to him!

To simply be around me, he had to alter his lifestyle to my meager list of "safes." At the very beginning of my allergies, sometimes that consisted of my mom washing his hair in our kitchen sink 5x to get the residual hair product out. Eventually, he switched to scent free shampoo, conditioner, soaps, and laundry detergents, and stopped eating in my vicinity and resorted to cooking in the garage instead.

My extreme allergy situation is the epitome of sacrifice. Still, the other aspects of life with chronic illness highlight it too. It is easy to dismiss its positive purpose in a relationship where its rarely warranted.

Enhances Communication

There are not many who handle the "my girlfriend is [or can be] allergic to me" concept with the same grace as my future husband. Sacrificing his old lifestyle to keep me safe is an act of selflessness that does not go unappreciated. However, there are still certain precautions to be communicated.

For example, if he arrives home with scent contamination from public, I ask him if he could please shower. If there is a safe food that is suddenly unsafe and no longer be eaten in close proximity, I ought to voice that. If I cannot follow through with the plans for the day, I should suggest an alternative and explain.

The sick and healthy alike rely on effective communication for successful relationships. I realize that the majority do not suffer from allergy cells gone rogue. Regardless, chronic illness diagnoses influences specific needs.

A downfall of mine is expecting him to automatically know. Granted, some things are a given, but my triggers are inconsistent. It is wrong to expect that when he cannot experience what my body is feeling.

Thanking him for what he does and clarifying consistently refines communication skills—making it less complicated to confront all of life together. There is seldom a lack of unexpected events with chronic illness, which ensures there is never a lack of gratitude for the partner undertaking them either.

Balancing Independence 

Couples often joke about who will be pushing who in a wheelchair when independence is replaced with senility. The idea is no big deal because the number of healthy days will surely exceed the sick.

Similarly, I joke that I was more independent when I was twelve than I am at twenty. There are periods when I cannot manage daily tasks, like administering medications with shaking hands or requiring help to the bathroom because I am barely able to lift my head off of the pillow.

The reality is that partners of the chronically ill do step in as a caregiver in such instances. Pushing towards independence unless in dire distress is a balancing act that separates the two roles.

Chronic illness gives a true depiction of "in sickness and in health" and compatibility that most don't encounter until well after vows are said. It teaches how valuable mutual support is in serious and unserious circumstances.

To reiterate, partners of the chronically ill really do see it all. They are able to divert attention from the chaos to the hidden blessings. With love, and maybe a little Benadryl, anything is possible.






"Love bears all things, believes all things, hopes all things, endures all things." - 1 Corinthians 13:7, ESV

Thursday, November 23, 2017

To Appreciate A Thanksgiving Without Food

This Thanksgiving morning, my kitchen will not be inundated with the aroma of a pumpkin pie baking. A turkey will not accompany a cornucopia of casseroles, sweet corn, and other classics of the season. My family and I won't hold hands around a table set for a several course meal, rushing through sentiments of thanks to savor the first bite of what will be leftovers for weeks to come.


I have not eaten in over two years, nor have I been able to be exposed to food proteins and chemical perfume scents without suffering severe reactions due to Mast Cell Disease. Thus, the act of cooking is a no go and others consuming most foods in my presence is not doable either.

My family's Thanksgiving celebration will definitely be atypical. There is going to be a meal for those who can eat. But the cooking and eating will be done in the garage that was revamped into a kitchen. Alongside our vehicle sits the kitchen appliances, like a stove, fridge, and a sink. I would hardly call it fine dining.

With a holiday so centered around food, how can someone who cannot eat give thanks?

Focus On the People

Food might be deemed the main event; however, there is good in not having food as an added distraction. It prevents the heedless mumbling of a thankfulness prayer with one eye slitted open, staring at the bowl of mashed potatoes as if they would not be there ten minutes from now.

Rather than immediately dozing off with bloated stomachs brimming to combustion in between brief conversations about televised football, my family and I plan to play games (hello, SkipBo tournament), decorate for Christmas, and continue to engage in thankful fellowship on our Thanksgiving day.

A Thanksgiving without food lends the opportunity to focus on what is truly importantto praise God for all blessings, no matter how shrouded. I might be sick, but I am feeling better than last week and at least I am receiving the necessary medications. My only safe formula has been discontinued, but I have enough for now. There is a nationwide saline shortage crisis, but my home pharmacy is doing everything possible to find a supply. These situations are like silver linings worthy of praise.  

Thanksgiving really would not be what it is without people. Although my entire extended family does not try to understand, I am thankful for the few immediate friends and family members who are willing to go above and beyond to accommodate the ways in which my chronic illness must dictate my life.

The previous holidays with the standard traditions nice too. I could invite everyone and their brother and his second cousin to eat a large meal, watch football, and take cat naps. I simply did not appreciate it as much until I could no longer partake.

God irrevocably provides. Maybe another Thanksgiving without food is just what I need to alter my perspective.







"Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind, for he satisfies the thirsty and fills the hungry with good things." - Psalm 107:8-9, NIV

Sunday, November 12, 2017

20 Things About Being Sick at Twenty

You meander your way into the doctor's office. It appears there is a long wait. The doctor is running behind, as always, and his staff is in no hurry to conclude their lunch break. You take a seat next to a frail old woman whose walker displays tennis ball decor. She is in the process of filling out paperwork. Although 60 years your senior, you notice that her symptom list is less extensive than your own. You feel slightly out of place, but after taking out your knitting, you receive an approving nod.

Your next scheduled appointment is with your long established pediatric primary physician that has agreed to continue seeing you until age 21. That appointment also entails lots of waiting. Surrounded by a room elaborately done in an ocean scene, it seems you have even less in common with the fellow patients. One toddler wails at the fish painted on the wall, while another wobbles to the toy box, a nervous parent trailing closely at its heels

The twenties are awkward. And when chronic illness is involved, we become the clumsy teenagers of the medical world never truly belonging in pediatric or adult care as we attempt to live up to the expectations dictated by age.


There are struggles undoubtedly unique to navigating the medical system in the decade of the twenties. So, here are 20 things about being sick at twenty: 

1. You are considered too old to be sick, others claiming that you should have "grown out" of your chronic illness by now.

2. Yet, you are also considered too young to have so many health problems.

3. You cannot possibly have life threatening conditions since you are not geriatric.

4. Medical professionals no longer put in as much effort to do investigative testing.

5. Nor are they as willing to be aggressive with treatments.

6. You miss having one doctor for everything.

7. Doctors always ask what your occupation is.

8. Judging by their eye roll, professional patient is not a sufficient answer.

9. You fear you will never be well enough to hold down a real job.

10. Emergency room nurses have to hunt down pediatric equipment.

11. Nurses are impressed at your medical knowledge.

12. You no longer get offered stickers and lollipops at appointments.

13. The only alcohol you have had the opportunity to try is the alcohol based preservatives in medications.

14. Friends laugh because you are at the doctor more than their grandparents.

15. The "three poke rule" for placing IVs has been abandoned.

16. Sonogrophers and procedure techs mention that they have an easier day with clearer images when you're on the schedule compared to their older patients.

17. Paperwork. Paperwork. Paperwork.

18. You are not shown the same amount of compassion.

19. Medical decisions are solely you're responsibility.

20. You wish you could have remained 12 forever.

Chronic illness or not, the twenties are an amazing period in life. The changes that come from transitioning to adult care from pediatrics should not have to detract from the experience.






When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. - 1 Corinthians 13:11, NIV

Sunday, October 29, 2017

Doctors Are People Too

My mom and I like to binge watch Grey's Anatomy. The forty five minute episodes break up the monotony of days spent on the couch. Normally I would refrain from watching a show so oriented around doctors and surgeries. My illness is its own medical drama—just without the on-again-off-again whirlwind romances and lacking the intelligent medical professionals willing to go to great lengths to solve rare disease cases.

Similar to Meredith Gray, I am anything but ordinary. I wish I could say I was an extraordinary surgeon saving lives, but a different perspective will have to suffice. Instead, I am an extraordinary patient. My rare disease is not the norm. With atypical symptomatology, there is not one single blood test or scan that can solve all of my medical problems.


As an extraordinary rare disease patient living in a world with so few extraordinary doctors, it is very easy to allow unceasing frustration to take over. I get so angry at the injustice my fellow patients and I sometimes experience at the hands of doctors. The average doctor does not understand the complexities of diagnoses like mine, nor do they try to. They are there do their job—nothing more, nothing less. If there is no imminent danger, if a patient is not about to die that very second in their presence, most are contented with blissful ignorance. Rather than concern, they pass off arbitrary, judgmental remarks. And worse, they blame the patient by dismissing symptoms on other (usually psychological) matters.

Medical professionals are placed on a pedestal, transformed into gods in draping white coats. They are de-humanized. Consequently, the doctors themselves attempt to hide behind an unfeeling facade. Along with their stethoscope, they never forget their mask of numbed apathy.

Grey's Anatomy, however, prompted the realization that doctors are still people. It is impossible for a human to know everything. I know I do not, so I should not expect them to either. At the end of the day, doctors have emotions. They experience loss and hardship. They also make mistakes. Any idiotic decisions are not out of malice. I do believe that it is never their intention to impose harm. It is simply a result of the stigma that frequently transforms their career into doctoring in a mechanistic, hard fashion.

While that does not justify the wrongdoings of doctors, perhaps I need to cut them some slack. The truly extraordinary doctors are not know-it-alls, but they dedicate their lives to continually learning—admitting that they do not have the answers, yet facilitating their power to try to help anyways. They are the ones brave enough to open their hearts to care for patients and to research what they do not understand.

Extraordinary doctors admit that, like you and me, they are people too.


Sunday, October 22, 2017

Anything & Everything

"You can do anything you set your mind to" and "the only disability in life is a bad attitude" two sentences intended to be comforting. The smile and warm tone that accompanies them conceal the real truth. They are a sorry consolation for a disability, but seek to make one feel better when held back from their said disability.


I once held the same opinion ended from such empty words. There was always a recourse to accomplishing anything and everything. All it took was effort and a little innovative thinking to surmount an obstacle.

Severe chronic illness, however, has incited a different outlook. I cannot do anything I set my mind to. My illness does present limitations. It is impossible, and quite dangerous, to believe otherwise. Learning this is quite a process. Often, it originates from a reckless defiance against the physical symptoms caused from illness.

While recognizing my limitations, I also became aware of the opposite—like what I CAN do. I agree that seems to be a positive focus, as it is rarely beneficial to place excessive consideration on an endless list of unattainable longings. But if not careful, hyper-focusing on what I CAN do very easily leads to obsession fueled by the attempts to make up for the abilities my body lacks.

Consequently, I find myself on a rampage of frantically pursuing whatever my body will allow—trying to knit a plethora of products before winter, completing school assignments well in advance, cramming my entire 'to read' list in a matter of weeks, or even writing many blog posts in a short period of time. Yet, I fail to give full attention to any one thing.

The above frenzy inevitably results in burnout, furthering the limitations imposed by chronic illness. Rushing my actions deprives me of precious energy and serves as a distraction from truly enjoying what I CAN do.

So, a brief hiatus from blogging was necessary. Aside from needing to grieve the loss of a close friend, I had to rethink the manner in which I approach the things I CAN do. I had to accept that I CANNOT do anything and everything.

...and that is okay.


Wednesday, October 4, 2017

Unexpected Prognosis

I am no stranger to death. My biological father passed away prior to my birth. The man I thought was my dad until I was old enough to understand the situation died just before I turned 5-years old. And after losing grandparents, uncles and other loved ones, the hurt is oh so familiar.

The hallow emptiness of loss does not get easier. The feeling always resonates with the emotions of the little girl on her aunt's swing set finding out that daddy was gone, and as she frantically pumped her legs, she could never swing high enough to bring him back. The only difference is that now, with maturity, I have learned how to appropriately grieve.

On Thursday I was at the hospital visiting another patient with Mast Cell Activation Syndrome. She is only ten years old, but has bravely endured the each obstacle presented by her illness. During the visit I received a text informing me that my dear friend, Taylor, had went to Heaven that morning.

My first instinct was to have a crying, blubbering meltdown. As said in my Instagram post:
Most would not have exemplified the faith, strength, and courage that Taylor did throughout her many battles. Taylor and I were in the “same place at the same time” when it came to life. We are exactly the same age and both had to defer our spot at our dream colleges after becoming severely afflicted with MCAS. Sharing in that struggle was the beginning of our friendship.  She never failed to use her circumstances for good. 
Reminiscing transports me back to September 2015. In that month, I was hardly able to sit up due to severe reactions. I had not yet begun the CDI treatment. Taylor texted me almost 24/7 then, ensuring I was not lonely living between doses of medication. Later, I started presenting with scary new symptoms. An EpiPen was in my near future, but I was petrified to use it for the first time! One evening the knot in my throat grew increasingly bothersome. I was on the couch texting T. All night and into the next morning she eased my nerves by walking me through the step-by-step process of using the Epi. She reassured me that it helps so much and recounted her experiences so that I would be less scared.   
Even in the times we were too ill to talk, Taylor was always there. Our connections are strong enough not to require words. I will miss our group skype chats and our laughs and inside jokes.  
While my sad eyes exuded tears, I quickly had to regain composure. I was not alone. I was in the presence of a very young MCAS patient that I did not wish to scare. How was I supposed to explain what had occurred? We are told that our form of the disease is not deadly. Yet, the condition we all share had taken a life. In fact, it has taken many lives this month.

I was tempted to offer reassurance, but I stopped myself. I thought of the numerous rapid response calls, the surgeries gone wrong, sepsis, almost starving. It would be empty justification because it could easily be any of us.

Losing a friend is inevitably difficult. Losing a friend with a shared diagnosis is a completely different experience. It makes it increasingly more real. Why them? Why not me?

The God-given prognosis is not always that of medical doctors. Taylor's legacy is not over. We vow to keep it going. As I prepare for my feeding tube replacement procedure this morning, I know there is a new angel shielding me in this fight.







The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. - Job 1:21

Tuesday, September 26, 2017

STARVING TO DEATH: Abbott Nutrition Petition

Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death
As most are already aware, I am feeding tube dependent. The only formula I have tolerated decently is Elecare Jr. Unflavored. Upon receiving a recent shipment of Elecare Jr. Unflavored, I noticed that the outside packaging was different. I scanned the labeling and noticed four discrepancies in the ingredients.


To receive clarification, I called the company that manufactures Elecare Jr. known as Abbott Nutrition. Abbott stated that they had been directed to change the wording on the labels to simplify the ingredient names for the general population. They assured me that they were no changes in ingredients—strictly the outside packaging.


Later, I trialled one of the newer cans with the updated label and experienced reaction symptoms. I had increased pain, swelling, etc. It worsened with each new can. I accepted it as a fluke, but resorted to using one of the cans with the older label instead. I eventually returned to my baseline. I continued to use the remaining old cans I had left until I had to use the new shipment again. Again, I started reacting.

It is not just me either. Multiple others have even ended up in the hospital from reactions to the new label Elecare Jr. cans. We have all called to report the incidents, but Abbott continues to tell each of us that there are no previous complaints and they refuses to admit to any changes.

This is a terrifying situation, as many patients are at risk of losing nutrition once the stashes of old label cans are depleted. So, I have started an online petition against Abbott with the goal of convincing them to bring back the old formulation of Elecare, or at the very least to admit their wrongdoing. Visit the petition link for further details.
Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death
It is a great feat to incite change in a major corporation. I get that employees of Abbott have a very stressful and deeply involved occupation. Their days are filled with lengthy business meetings, manufacturing processes, factory maintenance, media inquiries, etc. But afterwards, employees return home to their healthy families. They sit down for a nice dinner afterwards, while Elecare Jr. and anything medical related is pushed out of their minds until work the next morning.

I do not have that luxury of forgetting. Although people like me cannot eat, Elecare Jr. is our way to remain home and enjoy life with our families. Before bed each night, we connect ourselves to a feeding pump and run our formula. And that is not a bad thing. It is what we are willing to do to live. We have a choice.


However, because of the changes made to the Elecare Jr. formulation, we are forced to endure increased pain, we are ripped from our homes due to hospital admissions, and more importantly, Abbott has revoked our right to a choice to live. Using the new Elecare equates to death. Yet, having no formula also has the same futile outcome.

Please help. The victims of this situation could easily be your mom, your dad, your sister, brother, child, or friend. It could easily be you.



Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death.

Thursday, September 21, 2017

Milestones

One month, two month, three month, four. It is another year older, walking and eating, and attending school. There is the first goal scored on the children's soccer league, an invincible teenager's awkward first kiss, and then a graduation. Afterwards, an application is placed for a new job that likely began as an internship. Then, perhaps there is a tally to mark the number of days that have passed since some horrible experience—serving as an optimistic "I made it through." These events share a commonality. They are all life milestones and are undoubtedly celebrated.


Milestones are defined differently in the life of someone with a chronic illness. They are not necessarily joyous occasions. To me, they are a reminder that I am so far from where I wish to be. Time is inherently passing and life is inevitably changing. However, it is not always for the positive. I am definitely reaching milestones, but not the right ones.

Two years ago, I should have been moved into my college dorm and attending freshman classes at the private liberal arts college I received a scholarship to. Instead, I was at the hospital using my first EpiPen. I had already not been home more than twenty sleeps that summer due to a series of hospital admissions.

Flushed and swollen, a gurney transported me to a room. I was Florida Hospital's most recent patient of the oncology ward. For that stent, I had made it a whopping eighteen days at home before beginning what would turn into a consecutive five month hospital stay.

A shy, oriental nurse introduced herself. She tried to provide a semblance of comfort for a disease few people understand. That is, until I was whisked into a rebound reaction from a strong laundry detergent.

Unfortunately, the reactions were not of the treat and go on variety. Emergency medications brought stability for about an hour. Despite regular bolus dosing of IV Benadryl, I had lost all foods and was unable to tolerate J tube feedings. TPN was failing too, worse than feeds, and my symptoms progressed throughout the entirety of the infusions. I went over a week subsisting solely on IV fluids (that I also reacted to). The hope was that the break from TPN and gut rest would give my body a reprieve from the reactions.

That plan was unsuccessful, as previous bouts of nutritional crises left little reserve. Starvation was imminent. The acute consequences of reactions were potentially deadly faster, making neither option very palatable. The doctors had to implement a treatment that would allow my body to accept nutrition without immediate anaphylaxis. Two years ago, as a result, I was placed on the Continuous Diphenhydramine Infusion (CDI)—a continuous infusion of IV Benadryl.

Read Diphenhydra-what? - The Continuous Benadryl Infusion.

It was a treatment my medical team did not intend to exceed past three months. After three months, my health would be much improved. I would be better. My body was supposed to have snapped out of it, or I was meant to find a successful concoction of medications to control the disease.

The CDI served (and continues to serve) its purpose: Consuming food remained futile, but J tube feedings stopped causing instant anaphylaxis. I only resort to TPN for brief flares, like when feed reactions become too severe. Even then, the TPN reactions are less in the sense that they slowly build to an ICU situation. It has not solved my weight problem though. My weight decreases regardless of intake if slightly reactive to nutritional. That tends to get me into trouble when running feeds, supplementing with TPN or lipids, and massive steroid doses do not change the number on the scale.

Things are relatively stable on the CDI. Well, as stable as the precarious mast cells of the severely afflicted can be.

Three months turned into two years and counting—two years of Benadryl infusing into my veins every second of every day, two years of treatment trials, buying time, and waiting for life to go back to how it was when I was healthier. Sick nonetheless, yet healthier.

And it has now been two years since my life changed forever—two years of being alive when, considering the circumstances, I should not be. I think that is a milestone. Still, it is difficult to celebrate this particular CDI milestone. So, I won't. I choose to celebrate life. Period.


Saturday, September 16, 2017

God's Cliché

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11, NIV 
In the past, Jeremiah 29:11 conveyed almost a cliché  The verse was just an overused Christian platitude, belonging to the many scriptures indicating trust in God's plan. Now, I have a different perception.


I always expected the plans I had for my life to align with God's. I was certain that I would follow the patterns of a typical Christian. The vision entailed pursuing a higher education where I would later establish a teaching career. I wanted church and mission trips, to be married young, a yellow house with a white picket fence, and four biological children—2 boys and 2 girls...if we are being specific.

Time, however, made it abundantly clear that God has a different outline. I got sick and it changed things. I was left perplexed—confused and scratching my head, questioning God, and kind of angry.

With a stubborn personality, it is almost instinct to initially discount opinions, views, and overall plans that are not unparallel to one's own. They are different and different must mean incorrect or inferior. On occasion though, it can come as a surprise that those once rejected ideas are eventually accepted after deeper contemplation.

But is God ever wrong? His plans are the opposite of the plans I had concocted prior to becoming chronically ill. I am too sick to attend church. Mission trips are out of the question. My college courses are strictly online. Teaching is likely not a practical career with my illness. An "in sickness and in health" marriage will have to be under unfortunate "in sickness and in sickest" conditions. And I am not healthy enough for biological children.

So, it is difficult not to jump to the conclusion that God's obviously contrasting plans are wrong. His divine nature does not render Him free from our humanly projections. However, it does give all the more reason to warm up to His will.

Jeremiah 29:11 is no longer a hackneyed bible verse. It really is brimming with meaning. Lack of experience simply inhibited my understanding. It is a reminder that God has plans to prosper and never to harm, even when I cannot fathom how that can be and when everything possible is going awry.

Yes, God's plans can not compare to my own. They are better.