Monday, February 19, 2018

Where Then Is My Hope?

I remember it vividly. I was barely a teenager when I stepped into the autonomic clinic. My medical journey had just begun. A copy of Stephen Chbosky’s The Perks of Being a Wallflower laid in my hands, an attempted distraction from the boredom of the waiting room. I counted on a million ‘if only’s— if only I encountered the right specialists, if only I found the magic medication, if only I underwent the appropriate testing, if only the doctors found the underlying diagnosis, if only…if only.  

And thus, I flew from my home state of Florida to overcast Ohio for an appointment with Dr. Tom and Gisela Chelimsky. He is a neurologist, she a gastroenterologist. They join forces on scheduled days for their autonomic clinic. Although previously diagnosed with POTS by the Mayo Clinic in Minnesota, the Chelimskys confirmed that diagnosis, added neurogenic bladder and fibromyalgia to the list, and aided in symptom management. All of the traveling since becoming ill had to lead to answers. If only I encountered the right specialists.


Conditions under the ‘Dysautonomia’ umbrella, like POTS, rarely occur alone. The same applies to my other diagnoses of Mast Cell Activation Syndrome, Gastroparesis, etc. Each is caused by an underlying cause. During my appointment, the Chelimskys suspected that they knew mine—Mitochondrial Disease. I was told not to research the condition online. There is a wide spectrum in terms of patient severity, and a search surfaces the most petrifying. I left the appointment under the direction to take Coq10 and carnitine. The supplements are included in the ‘Mito cocktail.’ (The Coq10 helped with episodes of weakness and the carnitine did nothing). If only I found the magic medication.

Well, I did Google Mitochondrial Disease. I cried all night in the hotel bathroom. The thought of Mitochondrial Disease was eventually dismissed. Two years later, after it was mentioned by a second neurologist, the possibility resurfaced. I was sent to see Dr. Shoffner in Atlanta, Georgia. The neurogeneticist conducted a series of blood draws, urine collections, a muscle biopsy, a skin punch, and a lumbar puncture as part of the genetic workup. If only I underwent the appropriate testing.

A couple months passed and I received an email informing me that the remainder of my tests were not in; however, the lumbar puncture revealed unexpected results. My methylfolate levels in my cerebral spinal fluid were extremely low. It was already impacting my neurotransmitters and I was positive for folate receptor antibodies. I was diagnosed with Cerebral Folate Deficiency. I did not align with the typical presentation, but I was prescribed a medication called Leucovorin as treatment. To an extent, I was relieved to have been given answers. I had finally found helpful doctors. I had testing. I found a diagnosis to be treated. The ‘if only’s’ I hoped for seemed to be transpiring.

I was never able to make it to my follow up appointment, as I ended up inpatient and was unable to travel. Following my lengthy admission, the doctor had gone strictly to research and was no longer seeing patients. I was to have my pediatric doctors in Florida handle the situation. They were stumped. Cerebral Folate Deficiency is normally caused by Mitochondrial Disease, but my muscle biopsy was inconclusive with non-specific findings: atrophy, amino acid and acylcarnitine abnormalities, and 2 heterozygous mutations that are “likely not disease causing.” In the interim, I started rejecting oral medications due to reactions from my Mast Cell Activation Syndrome (MCAS). Unaware of the brain damage consequences of untreated Cerebral Folate Deficiency, the Leucovorin was discontinued. I had not noticed benefits anyways. Apparently, it takes up to 9 months of treatment to notice improvements. That tidbit was unknown at the time.

Now that I have moved and switched care to adult doctors, I am restarting treatment for Cerebral Folate Deficiency. Instead of the tablet, I will infuse Leucovorin via a central line to bypass reactions in the GI tract. Current doctors are just as perplexed—if there is no obvious confirmation of Mitochondrial Disease evidenced through the muscle biopsy, what is causing the Cerebral Folate Deficiency that is common amongst the Mito patient population?  

My records were sent to a local geneticist specializing in Mitochondrial Diseases and metabolic disorders. I have my appointment on April 4th.  With this health regression, I will try anything to help me feel better. I want answers more than ever because maybe, just maybe, the mast cell disease will improve if only we find the main underlying diagnosis.  

The ‘if only’s’ returned much quicker than they had left. The tests only prompted additional questions, the specialists more doctors, and the medications new symptoms while not preventing progression.

I am not that same 14-year-old girl reading in the waiting room of the autonomic clinic . I am sicker than I ever thought possible at age 21. Out of sheer desperation, I placed every last inkling of hope into modern medicine. It is not like God cannot use those things as a vessel to do His work. He certainty can. However, they must be recognized as such. No doctor, no medical test, no medicine, and no diagnosis can heal me. I cannot put my faith there. God alone can fulfill my ‘if only’s.’







"Where then is my hope—who can see any hope for me?" - Job 17:15, NIV

Friday, February 9, 2018

What Doctors Do Not Tell You About Your Feeding Tube

I am a strong advocate for portraying the positives of any situation. There is no use in focusing on the negatives that cannot be changed. Despite this, I realize that maintaining an incessant happy happy joy joy demeanor is unrealistic.

As evidenced by my last post, Feeding Tubes Are a Good Thing and there are endless reasons why.


I had my first feeding tube placed at 16 years of age. Prior to that though, the prospect of a tube was threatened by my doctors on numerous occasions. Yet, they failed to offer explanations, good or bad, about the device that supposedly saves lives. I was left with, “Okay, you are starving. Here is a feeding tube. Now you won’t die.” I had to form my own conclusions and a feeding tube was the worst possible outcome. The prospect was petrifying.

All of my energy went into avoiding it. Stepping on the scale was a tear inducing ordeal. As the number on the scale decreased, I knew I could not continue in a state of malnutrition. And then I was tubed. Initially, resorting to tube feeding seemed as if I had given up. It was like I had lost the fight, succumbing to hell that meant living with a feeding tube.

Shortly after my GJ feeding tube surgery, I realized how incorrect I was. My life had changed, but it was not for the worst as the doctors previously implied. It was for the better. My quality of life had drastically improved. I was less nauseated, had energy, and my fainting and blackouts lessened. I became thrilled about life again because my feeding tube opened a world of new possibilities. I anticipated the future with excitement rather than nervous dread of the unknown.

So, I try to raise feeding tube awareness centered around the good—the positive outcomes not often spoken about. Still, an important facet of awareness is authenticity. Just as medical professionals fail to mention the positives of a feeding tube, they do not even begin to cover the challenges. It would be wrong of me to pretend that they do not exist and to claim that I did not believe in a plethora of the feeding tube misconceptions.

 I would tolerate the feedings and my symptoms would disappear.  

Food and I were obviously not working out. A feeding tube meant I did not have to rely on consuming food for survival. Problem solved, right? Such an assumption was a bit misled. In my case, the issue was not food, but my GI tract. Placing a feeding tube does not heal my faulty GI tract. It is simply a tool that makes the intake of nutrition a little easier. There is no guarantee that formula will be tolerated without symptoms.

Complications would not happen to me.

Infection, buried bumpers, tube migration, stoma burns, granulation tissue…complications are real. No tubie is immune to them.  

I would never feel hungry.

I was under the impression that I would never want food due to how ill it makes me. Despite having a feeding tube, I do get hungry and I do crave regular food. Thankfully, I will not exhibit physical signs of hunger when receiving sufficient calories through my feeds. If circumstances require an increase in calories, like if sick with a virus, hormonal influences, etc., then my stomach will start growling and I will feel hungry.

The tube stoma does not hurt after the initial surgery.

My feeding tube site, the stoma, is always super sore. There are various explanations for stoma pain. After the initial surgery, the pain in my abdomen was comparable to working out and doing lots of sit-ups. Within a full month that muscle soreness pain completely dissipated. However, it was replaced with a new pain.


The body attempts to close the new wound during the healing process, but it can never fully heal because the tube is holding the stoma open. That results in a buildup of tissue around the stoma called granulation tissue.   With the tube present in the GI tract, the body’s natural instinct kicks in. The stomach tries to digest the tube. Although the tube is held in the stoma by the internal bumper, digestion causes movement of the tube—a feeling similar to a spasm and like the tube is sucking in and out.

Healing, movement from digestion, and daily activity all contribute to granulation tissue. Granulation is perfectly normal, and some have it worse than others, but it hurts! The tissue contains nerve endings. As the tube moves, the granulation tissue bleeds and the pain increases.

By the end of the day, my abdomen is really sore!  

Eating for pleasure would be easier.

A feeding tube definitely does not prevent a patient from consuming food orally, nor does it mean that they should not try! Before I Mast Cell Activation became a factor, there were moments when I could eat ice cream, apple sauce, or drink and it would all literally pour out of my stoma onto the floor.   Leaking varies. My stoma tends to leak excessively. Adjusting tube sizes is helpful, but does not totally eliminate the leakage. It causes oral eating to be difficult. Aside from causing symptoms related to my condition, the leaking adds to the pain because the food particles irritate the stoma and causes burns from stomach acid around the site. I have a very high pain tolerance. I have endured sepsis and multiple surgeries without pain med one, but there is something about burns around my feeding tube stoma that makes me cry like a baby.

I wouldn’t mind if I were connected to a pump the majority of the day.   

The amount of time I am connected to run J tube feeds has differed depending on my health. It is rarely less than 12 hours. Typically I run feeds for 16-18 hours. Tubing, a feeding pump, and a backpack is my best friend for the duration I am on feeds. I usually accept that fate with a smile. Inevitably the tubing starts to tangle, air gets in the line, or I am restricted from an activity…and then feeling “tethered” to tubes and lines is incredibly frustrating.  


There is no doubt that my health has declined since I was first tubed. I was exceedingly more functional then. And because of that, I now occasionally feel that the pain and inconveniences of a feeding tube do not warrant the benefits. But no matter how many melodramatic just pull out my tubes and let me die moments I must endure, it is a small price to pay for being alive.






Feeding Tube Awareness Week 2018

Tuesday, February 6, 2018

A Feeding Tube Is A Good Thing

"Hello, my name is ______ and I have a feeding tube." Such forthright statements make for some pretty awkward introductions.

There is an overall stigma that feeding tubes are "gross," "weird," or "only for babies and old people." To be clear—no, those with feeding tubes do not constantly smell like vomit and are not gross. It seems weird because the concept is unfamiliar. And it is true that babies and geriatrics have medical conditions requiring alternative feeding methods, but feeding tubes are not isolated to one patient population. So, hiding the fact that I have a feeding tube fuels that stigma rather than clarifying common misconceptions.


Pouring formula into a bag to later prime the feeding pump is just as normal to a tubie as cooking a spaghetti dinner is to the able bodied. It is a daily part of life and not given a second thought...until it is, which is when it is important to explain tube feeding to others.

As tubies, we are accustomed to life with a feeding tube and all that it entails. We tend to forget that other people may not know how to respond. Whether with family members, friends, strangers, and acquaintances—there are inevitably situations where the topic arises. There are a few thoughts that tubies should keep in mind!

Be honest.    

When it comes to tube feeding, I abide by honesty is the best policy. It is a balance between giving enough information without seeming completely overwhelming. An immediate confrontation spewing random facts and tidbits about my feeding tube and why I need it is obviously inappropriate. However, if the student in the next seat over offers a snack or if a coworker proposes the prospect of meeting for lunch, it might be worth briefly mentioning.

Methodically plan responses. 

Explanations change as the relationships grow and change. Initially, keeping it short and sweet is sufficient. An acquaintance probably does not need elaborate in-depth details, but a close friend, family member, or potential partner does. Later, staggering tube comments and responses based on the role that person plays in my life is helpful.

For example, I told my now fiancĂ© about my feeding tube in the friendship stage prior to beginning the relationship. I happened to slip subtleties about my illness and the possibility of a tube in conversation. I felt he must be aware of what he was getting into.

They stress too.   

Sharing the part of life that revolves around formula cans, feed and flushes, and unexpected tube feeding catastrophes can be difficult. Regardless, it provides the ideal opportunity for others to ask questions for awareness. Similar to how we stress over when and who we should tell about our feeding tubes, they too have worries: Am I allowed to eat around a tubie? What questions are rude to ask? Is this insensitive?

Spread awareness. 

A feeding tube, while perceived as negative, is a good thing. It gives life, where without it, there would be none. Why not share the good news? You would be surprised to learn that most are okay with the idea of feeding tubes and are genuinely curious.






Feeding Tube Awareness Week 2018: February 5-9th. 

Wednesday, January 31, 2018

Not If, But When

A repulsive, disbelieving gaze diverted to the lumens dangling from the upper portion of my arm. I never truly apprehended its meaning as the scratchy, repetitive noise of the portable IV pump resonated in my ears. It was a reminder that this was not supposed to happen. Central lines were for the patients who were really super sick, the ones who had exhausted all of their options. That could not be me, could it?

But it was. I was airlifted via Angel Med Flight to a hospital out of state due to uncontrollable, severe reactions caused from God knows what. The first of my countless PICC lines was placed for TPN and high dose intravenous steroids. Oh, and Benadryl as needed. Eventually, we learned my reactions were a manifestation of Mast Cell Activation Syndrome.


Total gut rest on TPN and IV medications lessened the severity and calmed the reactions down. I was later sent home to begin real life with a central line. Suddenly, the horror stories replayed in my mind—sepsis deaths, site infections, blood clots and DVTs. My doctor was less than comforting. He offered no consolations to ease my mind, only risks to stress the seriousness of the situation. While the line was and is 100% necessary to save my life, it could take it just as quickly. He said, "It's not if, but when."

In the beginning, I was meticulous with my line. I knew I had to be. However, I was not over the top. I also trusted other medical professionals with line care. Although I was previously familiar with central line dangers, I never fully understood before my two battles with sepsis. (The first was from a skin bacteria and the second after the clave fell off of my bi-fuse extension). My entire perspective changed. I was no longer meticulous with my own line care, but absolutely anal. And my trusting nature with medical professionals disappeared, as I witnessed some of their mistakes with sterile protocol.

Since then, central lines have continued to be a critical asset to my treatment. I do not tolerate any oral medications and am reliant on continuous infusions. I must live knowing the impending risks of central lines and unconventional treatments like the Continuous Diphenhydramine Infusion, or not live at all. But is life with that kind of overwhelming anxiety considered living?

I recognize the fact that I can do everything correctly and sepsis can still occur. So, when the nurse leaves the flush uncapped a little too long, I kindly ask him to do it again, because it is hard living with the premise, "It's not if, but when."



Saturday, January 20, 2018

Hospital Admissions With Mast Cell Disease Part 3: Hospital Checklist

Wallet: check. IV medications: check. Change of clothes: check. Tube feeding supplies: double check. I often joke that I bring everything, including the kitchen sink, just to go five minutes down the road to the nearest store. Going to the hospital is no different. In fact, it requires even more planning!


A recent pre-planned hospital admission to begin TPN really got me thinking. Mast Cell Disease presents unique circumstances. I previously wrote a series of blog posts about hospital admissions with Mast Cell Disease. The first post addressed the never ending battle of confronting medical professionals that are not knowledgeable about the condition and its manifestations.

Read Hospital Admissions With Mast Cell Disease: Part 1 

The hospital can easily become a dangerous environment because Mast Cell Disease causes reactions to commonly used chemical cleaners, fragrances on hospital staff, and airborne and ingested foods. So, the second post elaborates on how to navigate those added triggers in an inpatient hospital setting—like alternatives to overcoming scent-laden doctors and nurses, as well as prepping allergy friendly meals with the hospital room as a kitchen when their menu offered is not safe.

Read Hospital Admissions With Mast Cell Disease: Part 2

With trigger exposure significantly increased, the necessary items for a hospital admission are not the straightforward PJs and snacks. It is important to have a hospital checklist to prepare for any potential situation that may arise while out of a home environment.

Medical Supplies

  • Medications (Scheduled and PRN) / Pumps, Pump Batteries, Syringes, Bags to Administer 

Some patients, like myself, are brand specific on medications and bags/syringes in which they are administered. Other medications are not easily obtained because they must be compounded to remove the fillers and preservatives. It is imperative to have ALL medications on hand because there is no guarantee that the hospital will have safe versions of specific medications. The hospital can "check in" home medications for the nurse to administer.

Home health infusion companies are not allowed to deliver if the patient is admitted. Instead, the company should be able to send a currier to the hospital pharmacy with the medications and supplies.  That way, the hospital can prepare medications and supplies identical to the way they are prepared at home.

  • Feeding Tube Formula, Pump, Pump Charger, Bags, and Extensions (if applicable) 

While in the hospital, I am usually on tube feedings or supplementing with tube feedings.  The hospital does not always have my special elemental formula in stock. I bring a few cans of the formula to use until the nutritionists are able to order it. 

Extra extensions for tube feeding and venting are also nice to have. Inevitably I will drop my extension for my mickey GJ button on the hospital floor. As a result, it takes many hours and five nurses to hunt down a replacement extension. 

Hospitals tend to prefer patients use Kangaroo feeding pumps. The pump I typically use from home is the Infinity. I always pack the pump and its compatible bags to use through the entire admitting process—whether it is in the ER or in between Kangaroo pump failures. (Trust me, those do happen)! 

  • Cooler 

Perhaps it seems crazy to tote a cooler through the hospital. It's not like a trip to the beach, requiring an artillery of refreshments, right? The cooler is beneficial to store safe food and water, as well as home IV medications that must be kept refrigerated.

  • Vogmask with Carbon Filter

The hospital is brimming with germs and scent triggers. The yellow masks typically provided are not suitable for a sensitive patient with Mast Cell Disease. They do a poor job at keeping out the strong cleaning chemicals and perfumes and colognes on staff. I prefer the Vogmask with the double carbon filter to ensure my safety because triggers are even encountered when cooped up in the room. 

  • NO Scent Warning Sign

The Vogmask is not entirely effective for scent triggers. I put a hand-made allergy warning sign on the outside of the hospital room door. Examples are in this post. It lessens trigger exposure by warning those wearing scented products not to enter. Unfortunately, there are always some who believe a medical degree exempts the warning from applying to them. So, the mask is backup! 

  • Central Line Dressing Kit / Alcohol + Betadine 

Again, I am very brand specific due to wacky mast cell allergies. If the admission is longer than a week, I pack a dressing change kit and my safe brand of alcohol or betadine in case the particular dressing kit is not available at the hospital. 

  • Tubie Pads / 2x2 Split Gauze

I go through gauze and tube pads like they are going out of style. Psh, I wish. When I forget to bring my own, I am stuck with the bulky 4x4 gauze at the hospital. I quickly learned not to forget! 


Self-Care

  • Unscented Soap/Shampoo

I do not tolerate the soaps offered by the hospital, despite it usually being delicate Baby Shampoo. 


Washing my hair in a puke bucket when unable to get out of bed is less than glamorous. Inevitably, it makes a mess! A friend made me aware of the hair washing trays and/or basins during my most recent admission. Hair washing is simplified with the tray, as a bed or chair can be moved to the sink. 

  • Hair Dryer, Hair Clips / Ties 

  • Toothbrush with Safe Toothpaste

  • Unscented Hand Soap

Nurses and other hospital staff are required to wash their hands and use hand sanitizer upon entering and exiting the room. Depending on the hospital, the hand sanitizer and soap are both scented and occasionally cause reactions. I pack safe hand soap and place it by the sink for all to use. 

  • Safe Cleaners

The products hospital janitors clean with cause me to react. They obviously clean my hospital room prior to my arrival, but any cleaning thereafter must be completed with safe products. I bring large alcohol wipes to clean surfaces if they do not agree to using water only.


Entertainment

  • Card Games
  • Laptop
  • iPod
  • Chargers for electronics 
  • Book / Kindle
  • Clip on Book Light
  • Headphones


Documentation 

  • Specialist Plan 

The average hospitalist is not very informed of Mast Cell Disease. And that is not a bad thing if they are open minded and willing to learn. Still, it is not wise to demand treatments in a confrontational manner. Having a written treatment plan from a physician that specializes in the disease is a great teaching tool and any medical professional is more apt to follow instruction from a fellow doctor than a patient.  

  • Contact Information

With a complicated condition, the more people on our side, the better. A written plan from the specialist is helpful, but a hospitalist might have further questions. Give them the contact information to the offices of other doctors on your medical team.


  • Medical Records 
The majority of admissions are to fix emergent situations and not for investigative purposes. Yet, it is convenient to have a binder full of medical records to reference.


Other

  • PJs / Comfortable clothes 
  • Socks
  • Sheets, Pillows, Blanket

A good night's sleep does not consist of your head sinking a foot into the pillow. While the hospital bed comes compete with linens, I bring linens form home that I know are washed in a familiar detergent to place on top of what is already on the hospital bed. 

  • Slippers
  • Rubber Flip Flops 

Showers in the hospital are what I call grody. The flip flops decrease the "ew" factor just a smidge. 

  • Positive Attitude 

Days in the hospital run together. Looking out of the small window, people as small as ants are participating in the hustle and bustle of life—oblivious to the isolated patient watching from seven stories up. 

Feeling sick makes it difficult to remain optimistic, but a positive mindset going into an admission really is essential. Try to keep from going stir crazy. I made it eight months. You will be home before you know it! 




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!