Monday, January 8, 2018

What A Chronically Ill Patient Wish Medical Professionals Knew

I just got discharged from a four day hospital stay. Before then, it had been awhile since the hustle and bustle of the hospital world collided with my own. This most recent admission surfaced a bit of emotion. Confrontations with nurses and doctors became overwhelming. While some medical professionals can drone on forever, losing themselves in science-y musings of the human body, it reminded me of the valuable information I wish they knew when handling their chronically ill patients.


#1 When I complain about pain, it is significant. 

I do not moan about my many ailments to be a drama queen. In fact, I prefer not to break out the melodramatics. I keep most complaints to myself. When I do mention my symptoms, they are serious.

I have an exceedingly high pain tolerance. For example, due to severe allergies from my diagnosis, I suffered through sepsis without any pain medication. Therefore, I might not seem like I am in pain when in all actuality, I am. Perhaps I am engaging in conversation, happily knitting, or completing homework—none of which disregard the pain I claim to be in. Conversely, this applies to the opposite, too. It is incorrect to assume I am pain free judging solely by external circumstances.


#2 I do want to be compliant.  

Medical professionals are often sought as a wealth of knowledge in their field. They are paid to offer their advice and suggestions each appointment and most do their job in the best interest of their patients. However, my chronic illness is not typical. Its ensuing health problems are not always obvious and are not guaranteed to be treated in the same manner as the average case. Years of medical mistakes have resulted in a lack of trust. Try not be frustrated if I am not immediately game for every treatment or procedure you mention.


#3 Being sick is stressful, but stress is not the cause of my symptoms. 

Pills, appointments, uncomfortable symptoms. Managing day to day life while chronically ill is difficult, especially considering the health implications that may result. It gets frustrating. As a psychology major, I know how mental health can vastly correlate with physical health. That's why I have learned helpful coping mechanisms. Dismissing my symptoms as a consequence of stress or anxiety is not okay. Stress and anxiety are two common repercussions that are secondary to long term chronic illness, but they do not cause my genetic conditions.


#4 Accommodating my quirky medical needs is appreciated.  

One of my diagnoses, Mast Cell Activation Syndrome, causes life threatening allergic reactions to perfumes, lotions, and scented products. Even in a medical environment, controlling all triggers is impossible. Every now and again a strong laundry detergent or hairspray will get to me. Whether it is changing into hospital scrubs or wearing a gown, it makes my family and I abundantly happy that you are willing to go out of their way to keep me safe!


#5 Appointments are just a snapshot of my day. 

Appointments are booked for a 15 to 20 minute time slot. That duration is probably the most put together and functioning I will be in a day's span. A smidge of makeup and nice clothes can conceal a lot! You do not see the remaining 23 hours of my day: fainting upon waking, puking up my lunch, or the nights spent in agonizing bone pain. Take that into account before sending me away without a concise plan, the discouraged expression clearly evident as I exit the office building.


#6 Without experiencing chronic illness firsthand, you do not know what I am feeling. 

I would not wish chronic illness on my worst enemy. It is not easy to convey what my body is feeling. An attempt to empathize does provide comfort, but forget the comparisons. They are usually inaccurate. True understanding of a patient's point of view only comes from those who have endured a chronic illness themselves. To say you 'get it' is almost belittling.


#8 Patients and doctors are both real people. 

Medical professionals have a career to be admired. Although your intervention in my care is necessary, you are more than prescription writers and procedure performers. That is why I ask the sonographer about her weekend or the cardiologist about his family. My desire is to be treated as a real person, so I treat you as such. I do not want to be viewed as the next number in an assembly line of problems to be fixed.


#7 I cannot do this without you. 

I do not have the resources to control my medical care. Despite my greatest efforts, I cannot prescribe my own medications, order tests, and operate in surgery. I cannot diagnose, organize hospital admissions, and schedule follow ups. These things are imperative to the chronically ill. You have the ability to change our lives. For the good or for the bad. Please don't abuse that power.



Tuesday, January 2, 2018

Letters To Myself

I wrote two letters to myself at the end of last year. They were both packed away in my stocking with the remainder of the Christmas decorations. The odd hiding place was intentional to ensure I found the letters exactly a year later. Their contents reflected the best moments, worst moments, adventures, and accomplishments of 2016.

Now I reread both letters. To My Future Self follows the best moments, worst moments, adventures, and accomplishments of 2016. From My Future Self summarizes expectations of 2017 that I had at the end of 2016, and is written as if my hopes had actually come to fruition.


Although 2016 is old news, and the focus of this post is 2017, my words then prevail. And in another year, my words now will hold true too.

The worst of 2017...

My health sort of plateaued in 2017. There was some semblance of unstable stability with my Mast Cell Disease diagnosis. Symptoms were on an even keel, providing I abided by strict trigger avoidance. I remained on the Continuous Diphenhydramine Infusion, SoluCortef, and small doses of intravenous Pepcid. I did tube feeds only with minimal amounts of water by mouth. I could not be in a public settings for more than half an hour. A slight alteration in just one of those things sent my body into a downwards spiral.

After not enduring the same dramatic health fluctuations of the previous year, I had time to focus on how different my life is. I fell into the trap of comparison, comparing my life to that of what it used to be and to the lives of peers my own age. Resultantly, 2017 was one of the most emotionally difficult.

I found it difficult to accept that my life was stagnant. Yet, "living to the fullest" in the way I yearned for was an impossibility. It caused to weeks to months of life threatening flares whenever I tried. I did have physical gains, but they were not enough for me to function outside of my rigid limitations. And it was not like fear was a mental restraint holding me back. It was a proven reality. I lost a close friend to a shared diagnosis and the loss made that reality significantly more real.

I distanced myself from others solely because of envy. Because they have the life I want. The life I can't have. I got angry at God for not allowing it to be.

The best times of 2017...

Feeling moderately better did not prompt the sudden influx of adventures I desperately yearned for. I was forced to confront the unproductive emotions I had struggled with.

I continued my education online. A year into my bachelors degree at a Christian college, having courses based on a Christian perspective was refreshing. I was able to take classes like Jesus In Matthew's Gospel that were not part of my major, but they were helpful in reconciling my relationship with God and releasing pent up anger. It really got me seeking God's will as opposed to my own.

November 2017
I met multiple best friends. We had connected years ago on social media through various chronic illness tags, but we had not ever met in person until this year. I am extremely blessed to have supportive friends. Their occasional company provides a precious sense of normalcy. I will never stop being thankful for those who are understanding.

Of course the highlight of the year was getting engaged to the love of my life, which I wrote a full post about in November! The center stone in the ring is from the wedding set my biological father had given to my mom before his passing. My fiancé and I experienced our first holidays as an engaged couple. It was so so special.

Read The Blessing of Chronic Illness In a Relationship.

December 2017
Winter is my absolute favorite. I got to see it snowing at home twice! Sledding down the hill in the backyard was a blast. My family, friends, and I made a snowman larger than me, complete with a top hat and a cute carrot nose.

Mom and I had endless Netflix binges, an inevitable consequence of spending sick days on the couch. Let's be real, "sick days" were a constant. The positive from such unfortunate circumstances is that we had extra quality time together that would not have occurred had I had the life of the typical twenty year old college student.

January 2017
Accomplishments of 2017...

I sent in applications for miscellaneous scholarships to contribute to my college tuition. Thus far, I have not had to pay aside from book materials. The financial protection shows that God never fails to provide.

My current medical team was tremendously helpful in managing my care outpatient—the total opposite of my health plan prior to moving out of state. I went a full year without a hospital admission!!! That is saying something for the girl who once spent 8 months out of a year in the hospital.

December 2017
Hospital or not, steroids were a necessary evil. I was on 150-200 mg of SoluCortef for daily maintenance to control my disease. Weaning in the typical manner was often unsuccessful. Decreasing the dose quickly or by multiple milligrams caused anaphylaxis, extreme bone and nerve pain, pancreatitis, and cardiac issues and arrhythmias.

Throughout the year, I discovered an appropriate method to wean. I made it to a total of 50 mg daily by weaning 0.5 to 1 mg per every two weeks. I am adrenal insufficient from long term steroid use, but I have come so far in my wean!

December 2017
Slowly upping my walking distance, considering I was mostly wheelchair bound before, is a HUGE accomplishment. I went from staggering to the bathroom and back to walking around the neighborhood. I also increased my exposures. While never without repercussions, I went in to the office supply store, Old Navy, Catos, Books a Million, and Barnes and Noble. My shopping excursions lasted all of fifteen minutes. I cherished that brief freedom nonetheless.

Predictions...

Going back to the letter From My Future Self, my predictions for 2017 were definitely wrong. I did not get the cure I wanted. I did not even find a medication to help, let alone a treatment that would allow me to stop the experimental Continuous Diphenhydramine Infusion that I have relied on for over two years. Every trial was a fail. I lost people I loved. I doubted my faith. Regardless, I came out stronger on the other side of the obstacles faced.

October 2017
My reflections are a reminder to keep persevering. Going into 2018, the start of the New Year has not treated me kindly. Worsening abdominal pain led me to the emergency room. I was diagnosed with acute pancreatitis with a lipase of nearly 800 and an elevated white blood cell count that is higher than when I was septic! By all means I should be admitted, but with the flu running rampant, I was discharged under the condition that I triple my home IV hydration, hold feeds, and get labs rechecked this morning. If there are no improvements, I will be admitted to discuss alternative nutrition options like TPN.

Still, nothing very good and nothing very bad lasts for very long. Whether a blissful moment, a steady mundane existence, or a precarious health crisis, I must learn to appreciate all seasons of life.


Wednesday, December 27, 2017

6 Tips For Newly Diagnosed Ehlers Danlos Hypermobility Patients

"Ewwwwww," says the kid in class ogling at the unnatural angle of my arm. The rude remarks and endless childhood injuries all started to make sense once I was diagnosed with Ehlers Danlos Syndrome Hypermobility Type.

After enduring months of concerning gastrointestinal and cardiac symptoms in 2010, I was sent to the Mayo Clinic in Rochester, Minnesota. My mom's phone rang as I was undergoing a workup for a condition called Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS). It was my pediatrician from home. The phone conversation entailed a series of random questions — Is Cheyanne's 'double jointed?' Does she have flat feet? What about a high, narrow palate? Yes, yes, and YES! In the midst of our confusion, the doctor had sworn she had figured it out. She explained that Ehlers Danlos Syndrome is a genetic connective tissue disorder that causes my symptoms and is commonly associated with my already established diagnoses of Gastroparesis, Dysautonomia, and mast cell issues.


We were seeking a condition that had a cure, the pediatrician included. EDS did not quite fit that criteria. It was dismissed to search for a condition that did. Two years later, ignoring the obvious did not prove to be fruitful.

I was sent to yet another specialist who took a thorough family history, assessed joint hypermobility with the Beighton Scale, and went down a symptom checklist. The geneticist diagnosed me with Ehlers Danlos Syndrome Type 3, or the Hypermobility Type (h-EDS). I was barely 14 and rightfully scared. Since then, I have acquired valuable tips to manage the condition.

  • Invest in supportive braces. 
My joints go out more than I do. While that pun is funny enough, it is beneficial to invest in braces with varying levels of support for problematic areas. I have knee braces, elbow braces, ankle braces, finger splits, wrist supports. It can be as simple as an ace bandage purchased at the local drug store, or heavy duty custom made hinged braces that insurance typically covers for the diagnosis.

Out of all of my joints, my neck causes the most disabling issues. My head is like a bobble head, my neck too weak to support its weight. It causes intense headaches at the base of the skull. A cervical collar is imperative to soothe the pain.

  • Deconditioning is real. 
Doctors often go off on deconditioning tangents. They ramble on forever about how it is beneficial to keep moving, why exercise is important, and that anyone who spent their days sick on the couch would suffer symptoms of increase pain and fainting spells. In the midst of misery, their words are kind of...annoying. And it seems less than helpful, like they are trying to place blame rather than improve my quality of life. Regardless, deconditioning is not an empty warning. It is real.

Exercise

Exercise makes a world of difference. Gaining muscle provides support to faulty EDS connective tissues. With muscle loss, like in the instance of severe GI involvement, my injuries increase tenfold. Muscle is also conducive for the EDS patients with Postural Orthostatic Tachycardia Syndrome. Upon standing, muscles contract around the loose blood vessels that contribute to tachycardia, syncope, and dizziness. Movement keeps the blood from settling in the lower extremities, increasing the chance it gets where it needs too be in the brain.

It is perfectly understandable that intense exercise is impossible. The goal for an h-EDS patient is to increase muscle mass enough for support, not to become the next body builder. Choose exercises that do not take the joints out of normal range of motion. Exercises done laying in bed serve the same purpose.

I saw many physical therapists that did more harm than good. As another example, when I did attend PT, I would do aqua therapy. That exercise style is typically preferred, as it is not strenuous. The physical therapist would have me hold light weights in my hands, moving my arms up and down against the water. Doing so allowed my elbows to go out of normal range of motion. I was frequently injured afterwards. Learn what feels okay for you. It may be different!

Use aids  

If daily activities are causing symptoms, do not be hesitant to use mobility aids or braces. I was embarrassed initially, but I should not have been. They are there for assistance.

Unless stated otherwise by a doctor, be sure to have scheduled time without the braces to prevent certain muscles from weakening. I use them as a guide to learn the normal range of motion. Once comfortable, I exercise without them even if I am dependent on them the remainder of the day.

  • "Party tricks" are entertaining to everyone but you. 
Leave the acrobatics to the circus. Party tricks are fun, but only at the expense of the h-EDS patient. Weird bending of the fingers, popping joints out at will, and other bodily contortions tend to elicit much attention. The "ewwwwww's" and snarky comments I received can attest! However, purposeful party tricks will cause unnecessary pain.

Read This Is What Ehlers Danlos Syndrome Is Like.

Unless it is the Beighton Scale used as part of the diagnostic process, I find it best to avoid "party tricks." Faulty collagen is not designed to stand the test of time. To minimize future problems, it is in my best interest to preserve my joints as long as possible.

  • Get yearly echocardiograms. 
Ehlers Danlos Syndrome Type 4, also known as the vascular type, is infamous for causing aortic dissections and the spontaneous rupturing of organs. Fortunately, the hypermobility type substantially lessens that risk. It is still suggested to get yearly or bi-yearly cardiology workups to measure the aorta and rule out structural abnormalities that all EDS patients are prone to.

  • Have an emergency plan in place. 
Like already mentioned, the hypermobility type of EDS is at a lesser risk for organ rupture, but h-EDS patients are more susceptible to it than the general population. It is important to keep that in mind in an emergency.
I keep the EDNF Wallet Card on hand to inform about the following:
- Joints may be lax and dislocate easily.
- Skin tearing and splitting 
- Mitral Valve Prolapse and hernias  
- Cerebral arterial rupture
- Avoid elective procedures
- Often require vascular surgery, ICU 
- Delayed healing
- Local anesthetics are shorter lasting
- Spinal involvement
All emergency staff should heed those warnings in the case of an emergency or trauma, like a car accident.

In addition to the wallet card, my medical ID bracelets says, "EMRGY INFO W EPIPEN." I have typed emergency information alongside my EpiPens that is specified to my particular presentation. It includes contact information, a list of current medications and dosing, my food and drug allergies, doctors on my team and their specialists, feeding tube and central line details, and an anesthesia protocol.

  • Live despite limitations. 
Every day Ehlers Danlos Syndrome hypermobility type and its comorbid conditions brings surprises, both good and bad. There are weeks to months where I cannot function. Expecting flares is realistic.

Find ways, within reason, to adapt. I wish someone had told me to not hold back when I was first diagnosed. Do not hold back in the activities that you wish to participate in because the memories from healthier times are forever cherished.




Tuesday, December 19, 2017

Don't Kick The Bucket: How I Plan With Mast Cell Disease

Life is busy. Most days, I feel as if I am running around like a chicken with its head cut off. There are college assignments to complete, Etsy orders to fill, doctors to see, house chores to do, and people to prioritize. Sick or healthy, the endless list of to-do's do not change. There is much to accomplish, yet so little energy to do it.

I push and push to get it all done, but it inevitably makes me sicker. Extra pain I can handle. Anaphylaxis induced by mast cell disease, however, is potentially deadly. It is a battle of the wills. And more often than not, my body wins.

The harsh reality is that chronic illness dictates which tasks will receive the fulfilling "check mark" and which ones will roll over to the next day, likely never completed.

Regardless of the diagnosis, chronic illness requires sacrifice. Mast cell disease presents a different facet though—the histamine or allergy bucket. Understanding that concept did wonders for my functionality in day-to-day living because it provides a basis in which to make said sacrifices.


Food, hormones, environment, medications, and stress serve as triggers for mast cell reactions. Each fill the hypothetical histamine/allergy bucket. The bucket is partially full with initial trigger exposure, leading to mild discomfort. There may be itching, bone pain, or slightly elevated pulse. When the bucket is overly full, it spills over to cause life threatening anaphylaxis symptoms—trouble breathing, worsening of systemic organ involvement. The reaction is usually not isolated to a single episode where symptoms return to baseline once treated. In many cases, the flare is long lasting. It entails weeks to months of suffering and emergency interventions.

So, how does the bucket theory have to do with a hectic schedule? 

On the typical to-do list, there are plans both big and small that will bring increased trigger exposure that exceeds the average threshold. Preparing in advance has been crucial to avoid an emergency situation. Every factor has to be taken into consideration to decide whether or not a task is doable and worth the consequences. 

For example, tomorrow I hope to drop off a few Christmas gifts at my home infusion pharmacy at the local hospital. While there, I know I will undoubtedly be exposed to additional triggers. There will be chemicals scents, such as perfumes on others, and maybe even chemical disinfectants. There is also the stress of meeting new people. 

Certain triggers are unavoidable. Since I am aware of the plan in advance, there are key questions I ask myself to lessen the "histamine" burden in my bucket. 

Should I make dietary changes?

Diet is imperative. Those with mast cell activation cannot tolerate the typical American diet. Processed cheeseburgers are not a friend, nor are packaged treats with preservatives. When there are plans that include increased trigger exposure, one has to be diligent in sticking to a safe diet. Diet varies by patient, but they share the common goal to make room for other triggers in the histamine bucket.
Low Histamine
For some patients, going low histamine a few days before is sufficient. 
Liquids Only / Elemental Formula  
The body releases histamine during the digestion process. A liquid diet relieves a large portion of that burden.   
Elemental formulas are so broken down that the body is less likely to recognize the ingredients as allergens. Some have formula as their sole source of nutrition, but others find it helpful using it in flares or preventatively. 
Water Only/Fasting
Although I am 100% J tube dependent, I still react to the formula, especially when my "bucket" is close to being full. I am practically a different person when going without food or feeds. While it is not ideal to go long periods of time without, fasting is my #1 preparation method for triggering plans. 
I disconnect from feeds a couple of hours early to ensure I am as least reactive as possible. In my experience, starting feeds again in the presence of public triggers is a guaranteed reaction. I tend to delay re-connecting for the duration, providing my weight is stable enough to allow it.
Of course, sacrificing nutrition is not ideal and should not be done frequently. However, with my disease state I find it is necessary in order to get out occasionally.
How can I conserve energy?

If I know I am going out, I have to conserve energy. Overexertion is a mast cell trigger. An outing will not be reaction free without a strategy. Other "to-do's" have to be altered.
If I tackle task A, will that effect event B? 
One task or event impacts the next. Redirecting to the hospital pharmacy example, the house must be vacuumed, the dishes washed, but I also am due for a shower. It is not practical to expend energy on chores if expecting extra triggers later when I go out to the hospital. So, the chores can wait until afterwards and I should shower the night before. 
Make Adaptations
Difficulty regulating blood pressure upon standing is a common Dysautonomia phenomenon. Maintaining vitals is a bodily stressor, which is a mast cell trigger. While I may be okay to walk short distances, using my wheelchair when out in public is how I decrease my histamine burden on the days with a lot planned. 
Are my medications/supplements therapeutic? 

In situations that are going to be overwhelming with triggers, it is beneficial to pre-treat potential symptoms by increasing medication doses with the agreement of a doctor.

Am I in a safe home environment? 

Home should be a safe haven. Coming back to a house full with triggering air fresheners, dust, or perfumes is the opposite of safe. Controlling every trigger in a house with multiple people is impossible, but at the very least, create a single safe room catered to any mast cell needs.

For me, this includes a room with no carpet, a large air purifier, and air vent covers. The covers are to prevent reactions to the heat and/or air conditioning. Before the outing, stay in the safe room to minimize trigger exposure. Afterwards, stay in the safe room to recover.

What other factors contribute to my histamine load? 

Aside from food, medications, and energy expenditures, there are further factors influencing reactivity and they should have an impact on the extent of the adaptations and accommodations to lessen the triggers that fill the histamine/allergy bucket.

  • Hormone cycles
  • Weather
Hot or cold, rain or shine, weather conditions cause mast cell disease symptoms. I am more reactive a day or two before stormy weather, as well as when the weather is hot and humid. 
Others tend not to be quite perplexed as to why we can do something one day, but not the next. The bucket theory is the perfect explanation. With the bucket theory, I do not have the same dread from an overwhelming to-do list. I do remain limited, but it is a relief to know that the planning and innovative thinking derived from the hypothetical bucket theory keeps me from literally kicking the bucket.





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

There 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 fiancĂ©, 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.