Sunday, August 20, 2017

A Little Brighter

The morning sun peaks through the window frame, emphasizing the silhouette of the IV pole. The blinds are drawn and the rippling rays quickly disperse in hiding as they are consumed by full luminescence. Stirring from a restless sleep, the pain is intensely exhausting.  The bone discomfort is crushing. My cheeks are flushed. Dystonia lingers in the cramping of my feet.

Some mornings, simply awaking is a regrettable experience. It is difficult to see the light in the figurative sense of the word. Illness steals it away. Mast Cell Disease is greedy. Its hands are covetous, seizing every facet of life in its obliterating grip. Yet, it cannot let go. It comprises the whole of me and my faulty DNA. Letting go is not possible without it taking me with it.

This disease has proven just how intrusive it can be. A friend of mine, also subjected to this awful disease, is currently in the ICU due to complications from a tumor that has rendered her paralyzed from the waist down. She has a blood infection, possible pneumonia, and has had to have a tracheostomy surgically placed to secure her airway in the case of anaphylactic reactions and while heavily sedated. Although God is perfectly capable of performing miracles, the doctors are preparing her and her family for the paralysis to be permanent.

The situation is physically, emotionally, and financially taxing. I have created a T-shirt campaign where the proceeds go towards her cause. Below is additional information about Taylor Nearon's Campaign:
Taylor Nearon, founder of Super T’s Mast Cell Foundation, is a dear friend and fellow Mast Cell Activation Disorder, warrior. She is currently in the ICU battling unexpected complications stemming from the disease and its treatment. This the fight of her life. Recent surgery has rendered her wheelchair bound for the time being.          
Taylor offers so much to all who encounter her. As the name of her foundation suggests, she has truly been a superhero to the mast cell community. Now is our time to give back. The proceeds from the T-shirt campaign will go to Taylor and her family to use for home and vehicle wheelchair accessibility accommodations and other medical expenses.
The Lord is undoubtedly the Great Physician, but my hope is that these funds will relieve some of the financial burden and allow Taylor to more easily continue the plan God has for her life. We appreciate the prayers, love, and support.   
Initially, the goal was to sell 50 T-shirts. That amount has since been surpassed, with over $1,000 in proceeds, and the new target is 100 T-shirts. I would greatly appreciate it if my readers would offer their prayers, as well as visit the campaign site. There are various T-shirts, V-neck tees, and tank tops. There is an option to donate too.

While Mast Cell Disease has stolen my ability to lead a normal life, it has also bestowed the gift of friendship and community I would not have known under healthy circumstances. The love and support we provide each other is undoubtedly special.

I yearn for the moment when all who are afflicted can claim that this disease gives more than it takes. Until then, I must keep fighting even when succumbing to nothingness is easier. Why? Because one morning I might painlessly open my eyes only to notice that the light is a little brighter.

And it is okay if I am scared. That means there is still something to lose.

"The light shines in the darkness, and the darkness has not overcome it." - John 1:5, ESV

Sunday, August 13, 2017

That Could Never Happen To Me

As I little girl, I was intrigued with the idea of breaking a bone. was not the actual act of breaking a bone, but rather, having a cast. I was practically green with envy at the kids able to prance into the kindergarten classroom with a neon colored cast that was quickly decorated with signatures. They were the coolest.

The longings of my 5-year old self were fulfilled fifteen years too late. I broke my wrist a couple weeks ago. It did require casting. However, the unpleasant experience was not offset by Sharpie well-wishes because mast cells absolutely hate marker chemicals. (To add, they also despise trauma of any kind. The break has led to increased widespread, full body bone pain, low grade fevers, and worsening of other symptoms).

The wrist fracture was not accompanied by a tale of recklessness that once left school aged students in awe. I was just on my way to the bathroom! It broke from a very minor fall after slipping on the hardwood floor. Such an fall has occurred manymany times without injury between past softball games, skating rink adventures, and simply being prone to clumsiness. The accident is further indication of the weakened state of my body.

I recount my wrist debacle because I never thought it could happen to me. Doctors warned of the impact Mast Cell Disease has on the bones combined with the Osteoporosis risk from years of malnutrition. I recognized that medication side effects could further contribute to poor bone health. I have witnessed the above cautionary transpiring in other patients.

Despite the knowledge, why was I surprised when it finally occurred to me? Attempting to answer that question highlighted a common thinking pattern.

Envisioning the future, there are vast possibilities for good. Much like I never predicted I would eventually suffer from a chronic illness, no one expects bad things to happen. To make misfortune less scary, we attempt to conceptualize it by assuming it can only intrude on the people lacking in faith or those who do not think positively enough. I thought hardship could not effect me. A friend of a friend, a distant relative maybe, but not me.

And then the unimagined did happen to me. I got sick. Yet, I reverted to my old beliefs determining that progression was impossible, as if I was some exceptional individual spared from the prognosis of my diagnoses. Never would I require a feeding tube. Never would I resort to TPN. Never would I use a wheelchair. Never, ever, never.

None leave this world unscathed from the "bad things." Even when there is an unforeseen purpose, no amount of positivity, support, or faith in God protects (Mom and I recently started a Bible study on the book of Job. Job, the most blameless and just man, still endured negative experiences).

While the tone of this post could be interpreted as confusingly pessimistic, I am trying to be thankful for the health I do have. It could always be worse.

Wednesday, August 9, 2017

You Know You Have Gastroparesis When...

Imagine a stomach flu that never ends. That is the reality of Gastroparesis. Gastroparesis translates to a paralyzed stomach. In other words, gastric emptying is sluggish and digests food at a slower rate than what is normal. In severe cases, the stomach does not digest at all. Eating becomes a struggle, sometimes requiring interventions like feeding tubes.

With the mention of such a condition, most would think that those with Gastroparesis have lives as rotten as the food in their dysfunctional stomachs. That is far from the truth.

I have Gastroparesis, but I also have love and happiness in my life. Still, there are certain aspects about living with Gastroparesis that only fellow warriors can understand.

In honor of Gastroparesis Awareness Month, you know you have Gastroparesis when: 

There are at least 10 types of nausea.

You have mastered the skill of feeling hungry while simultaneously wanting to puke your guts up.

Your GI doctor is practically family.

Strangers ask, "When are you due?"

Grocery shopping is your least favorite pastime.

Your shopping cart consists of crackers and baby food...You do not have a baby.

You have had morning sickness for the last nine months and counting.

You wish you had a deflate button.

Weakness and blackouts are just par for the course.

Feeding tubes and central lines can be life saving.

You have had the dreaded "nose hose" more times than you can count.

The thought of Ensure makes you shudder.

Glucerna, Orgain, and Carnation Instant Breakfast are not much better.

You give your medications pet names.

Bless good ol' Phenny.

And ODT Zofran.

There is always that one annoying person at social gatherings begging you to eat.

The lie, "I ate before I came," has saved you from many lengthy explanations.

All of the flavored gum and candy in the world cannot replace real food.

You hold back tears when noticing the low number on the scale.

Waitresses nod their heads disapprovingly, questioning whether or not you want crayons after requesting a kid's menu at a restaurant.

You met your bestie on an online GP support forum.

Leggings make up the majority of your wardrobe.

You plan your "escape routes" in case you need to throw up in public.

Reglan side effects are terrifying.

You curse the medical professionals who do not understand that patients sometimes gain weight when the body is in starvation mode.

Nighttime Prayer: Now I lay me down to sleep / I pray the Lord my feeding pump doesn't beep / If I should die before I wake / I pray I dream about eating that chocolate cake.

True friends keep a stash of your safe foods at their house.

Others are envious of your slim figure.

You are jealous that they are not starving to death.

Your feeding tube leaked on the guy you had only been dating for 3 months.
(yes, that really happened...HA!)

Liquid diets are not a cure.

Your 90 year old great grandma takes less pills than you do.

You have been told by others that they wish they had your illness so that they could lose weight.

Tired. You are so tired.

Bowel movements and bodily fluids are a common topic of conversation in your household.

Leaving the house entails packing an artillery.

A good day is when you are able ignore the discomfort in your abdomen for a few moments.

Although you are accustom to extreme pain, you realize the value of life.

Living with Gastroparesis is challenging, but it has strengthened your character.

The illness has taught you to always be empathetic and kind, as you never know what invisible battle another might be fighting.

Read You Know You Have Mast Cell Disease When...

Thursday, August 3, 2017

More Than A Headache: Diamond Headache Clinic Presentation

Migraines are a headache to deal with. HA, perhaps my pun is not that funny.

Did you know migraines extend beyond the symptoms of a throbbing pain or dull ache in the head? It can even entail solely gastrointestinal symptoms with the pain originating in the abdomen. They are undoubtedly debilitating.

My body has clearly conveyed that as truth. As I have been told, my pain threshold is abnormally high. It kind of has to be when Mast Cell Disease ensures that every form of pain medication known to man causes more problems than it solves due to reactions.

However, the severe pain attacks recently plaguing me are different. The entire area that is my abdomen is overtaken by an excruciating throbbing sensation. It is difficult to discern where it originates because it consumes all of my internal organs. Sharp twinges reverberate with the slightest movement. Yet, remaining still is next to impossible, as the discomfort leads to restlessness.

Earlier this week, Diamond Headache Clinic sent over valuable information regarding migraines. The presentation was enlightening. Although geared towards pediatrics, it provides useful facts about the various types of migraines, their diagnosis, and treatment options.

Presentation courtesy of Diamond Headache Clinic

These random, disabling pain attacks interfere with life. After research and viewing the above presentation, my symptoms definitely correlate with abdominal migraines.

Thank you, Diamond Headache Clinic, for connecting readers with helpful sources and for the informative presentation. The first step in relieving painful migraine symptoms is awareness. No one, adult or child, should have to suffer.

It is always best to consult a doctor in order to diagnose the cause of your migraines. Knowledge is power! 

Read more from Applied Medical Technology in How To Feel Comfortable With A Feeding Tube In Public

Wednesday, August 2, 2017

Unique Flare Essentials For Mast Cell Disease

Flushed skin, a swollen throat, and aching bones are indicative of the dreaded f word. We've all been there. One trigger sparks a cascade of cyclical reactions. It is a Mast Cell Disease flare.

Medications are a basic essential to overcome a flare. Enough Benadryl to sedate an elephant, along with an arsenal of other drugs, are imperative for symptom relief. There are many essentials out of the realm of medications that are just as fundamental though!

  • Allergy Pillow
A comfy bed is undoubtedly the ideal place to be when in a flare, but did you know that bedding can contribute to the allergy burden? An allergy pillow is important. They are designed to prevent the materials from trapping particles and allergens.

I use Sleep For Success by Dr. Maas purchased online through Bed, Bath and Beyond. It is worth the investment. As an added bonus, it comes with a thermo-regulating cover that is soothing to a Mast Cell Disease patient's flushed, irritated skin.
  • Ice Pack with Cover
"Is it hot in here, or is it just me?" is probably my most frequently asked question, aside from maybe "Where is the Benadryl?" when very reactive. The burning pain is relentless. An ice pack attempts to soothe the sensation of burning from the inside out, while also reducing swelling.

Temperature changes are infamous for causing reactions and an ice pack limits reactions to overheating. However, placing an ice pack directly on the skin can result in reactions to the cold! A well made cover prevents that. 

  • Filtered Mask(s)
This is a must! The flaring of Mast Cell Disease equates to increasing sensitivity to airborne triggers, like the chemicals in perfumes, colognes, soaps, cleaning products, and oils, as well as food. Masks keep the triggers to a minimum.

Traditional medical masks are composed of irritating materials that are difficult to breathe through if worn for extended periods of time. Vogmask is a brand that manufactures quality masks in cute patterns with and without filters.

My favorite is the N99C2V with 2 carbon filter valves, as it does not become stuffy and it is organic. The styles with 1 carbon filter are only slightly less capable at filtering as the double. The no filter styles are still superior to a regular medical masks commonly offered at hospitals.

    • Kindle / Tablet 
    Books are effective at distracting from painful reactions. They give the mind a focus. I am a book worm. To much distress, I found that I react to paper books when flaring. The manufacturing of paper requires chemicals that are not conducive to sensitive Mast Cell Disease patients. Thankfully, there is a way to avoid contact with chemical laden paper - a Kindle or another tablet!

    For books, the Kindle Paperwhite is less than $100.00 on Amazon. 

    The Kindle Fire is also an option. It is not ideal for hours of reading because it adds to vision problems, but it is better suited for other needs requiring internet access. In comparison to a laptop, the tablets are more portable to accomodate severe "can't lift your head off of the pillow" flares. 

    Downloadable apps are an awesome distraction too. 

    1. Words With Friends
    2. Word Streak With Friends
    3. Dots: A Game About Connecting
    4. Colorfy: Coloring Book for Adults Free
    5.  Cooking Fever

    • Staedtler Markers (Non-Scented) 
    Did I mention distraction? Low-key tasks that create a diversion from the pain is so so so beneficial.  Crafts and coloring are not my thing. Contrarily, my closest friends find adult coloring to be therapeutic. Markers tend to have a strong chemical scent to them that exacerbates symptoms. Staedtler markers are scent free and are perfect for crafting the tedious, reactive hours away.

    • EpiPen Case
    EpiPens save lives. Mast Cell Disease patients are prone to frequent anaphylactic reactions, which is why an EpiPen should be within arm's reach!

    Read The How's, Why's, and When's To Using An Epi Pen.

    An EpiPen case solves the predicament of partaking in a scavenger hunt to locate the EpiPen and it  maintains the proper temperature conditions necessary for the medication.

    Living with Mast Cell Disease is challenging. Every facet of life causes reactions when in a perpetually flared-up state. Retreating into a controlled environment until it passes is isolating, but the above essentials make it a little easier.

    What are your flare essentials???

    Enjoy this post? Check out my Summer Kindle Unlimited Suggestions

    Sunday, July 23, 2017

    When Times Are Tough + Friends Are Few

    "When times are tough, friends are few." 

    The above sentence was offered as a common consolation in my grief over lost friends.

    My medical issues just began to surface in late middle and early high school. Most adolescents are familiar with the loud ringing of the school bell announcing the much anticipated change of classes. Rowdy students fill the halls, conversing with friends about the latest gossip and the plans for the upcoming weekend.

    For me, that life came to a screeching halt when I got sick. I was more accustomed to the sound of IV beeping pumps and the alarms of the hospital monitors. My social circle was quickly replaced by doctors, as my symptoms demanded I stop going to public school like I always had. Homebound did not hold the same appeal. The friends who knew me prior to my illness seemingly fell off the face of the earth. Their offers to hang out dwindled. They were nowhere to be found.

    Within the next years, the number of appointments decreased and my symptoms were decently managed. I was then able to physically attend school for a couple of courses and complete the remainder of my credits online. I expected to pick up right where I left off. To my disappointment, my return back to school was not met with the happy welcoming of my expectations. Old friends proceeded to ignore my attempts at conversation. It was awkward. They could not understand how their once healthy, active friend they had known their entire life was suddenly struck with severe illness, nor could I comprehend the reason why they deserted me when I desperately needed support.

    Looking back, it is understandable. I was incredibly young when I became ill. Nobody was really at fault. My peers did not know what to say, so saying nothing was the easiest recourse, and I fell into the habit of silence to cope with my hurt feelings. But I carried resentment over this for years.

    I have noticed that the situation is difficult to handle at any age. The "when times are tough, friends are few" statement has held true well into adulthood. Hardships definitely test the strength of friendships. They show that even the loyalest of friends will disappoint on occasion, creating feelings of abandonment.

    Although painful, grieve and forgive. It is easy for the negative emotions to take over, but they can become toxic to a chronically ill body.  Instead of allowing hatred to accumulate, focus that energy on healing.
    At my first defense, no one came to my support, but everyone deserted me. May it not be held against them. But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed and all the Gentiles might hear it. And I was delivered from the lion’s mouth. - 2 Timothy 4:16-17, NIV
    Find the strength not to hold the anger against them. Letting go of the those hurts is rather freeing.

    Wednesday, July 19, 2017

    Secondary Burdens: My Chronic Illness Impacts Everyone

    Life with chronic illness leaves a lot to be desired. For lack of a better word, quite frankly, it sucks.

    Tomorrow my family and I were supposed to drive the twenty one hours to Minnesota to see the Mast Cell Disease specialist. I was really looking forward to it. In a way, it was like a mini-adventure. There were also a few health matters I wanted to pick the doctor's brain about.

    Unfortunately, it is believed that I am trying to fight off a virus, which is causing my mast cells to be more finicky than usual. Because of the flare I am in, the trip was canceled. The breaks of the rental car were put to a halt before we had a chance to back out of the driveway.

    It is understandable though. I am running a temperature and it is not wise to leave for an out of state appointment when beginning the trip unstable.

    A temperature bouncing up and back down indicates my body is fighting. But before the appointment was declared null and void, there were decisions to make. Should I go or not? If yes, were there any extra modifications to employ to ensure the trip went as smoothly as possible? 

    It left me weighing the pros and the cons. The goal of the appointment was obviously to better my health. Regardless of that, there are consequences. The drive is long, it is costly, and the trigger exposure from staying in hotels is immense! These consequences are increased tenfold when flaring from the virus.

    Being sick is inconvenient. Simple trips need special planning and accommodations. This burden is amplified since having a severe Mast Cell Disease. Every single aspect of life demands thought. The trip entails more than accounting for extra rest and the packing of medical supplies. It is not uncommon to have my family and I arrive at the intended destination only to have to leave because I have allergic reactions to the hotel: cleaning products, smoke, perfumes, oils in the rooms, sheets, etc. And do not get me started on bathroom stops. The benefits of the appointment are likely not worth the risks of these unforeseen circumstances, while already flaring with a virus.

    I had to sacrifice not going because I am aware that my body is in no position to handle it. To contribute to my less than cheerful mood, recent events have highlighted other sacrifices as well.

    Chronic illness inevitably requires sacrifice on the patient's part. That is expected. I am not fond of the concept. There is no escaping it though. However, the sacrifices extend far beyond impacting solely me. It effects everyone involved in my life.

    While I cannot eat, my friends and family cannot eat or cook most foods around me because of my airborne reactions. After coming home from work, from being out in public, or eating, they must shower and change clothes despite probably having showered twice that day. I cannot wear perfumes or use scented products, nor can anyone in near proximity.

    My illness also interferes with their plans and goals. It is not as easy for them to just omit my illness from their plans. Exacerbating my condition with the added triggers that could be avoided causes their life to be increasingly difficult, as their roles as mother, father, partner, or friend must double as nurse when I am too sick to care for myself.

    It is upsetting when my health prevents me from living how I would like and intrudes upon even life's seemingly trivialities. I am thankful that the people in my life love and care for me enough to consider me in their decisions, but I hate realizing that they are enduring similar emotions as a result.

    Thursday, July 13, 2017

    How To Overcome The Trauma of Scary Treatment Trials

    I fiddled with the orange prescription bottle, repeatedly removing the child proof lid before taking a pill out. I gulped the appropriate dose. Occasionally, this simple act is a success. The medication does exactly what it is supposed to and improves my quality of life.

    More often than not though, it is a failure. It does not subside symptoms, causes an unusually rare side effect that occurs in .02% of the world's population, or results in disease progression. The latter is the most terrifying.

    When my mouth becomes numb, swelling goes up, and pulse gets so high or so low that doctor's fear arrest, the failed drug is the opposite of a treatment to my body. The distress is only compounded once such a response is no longer an isolated incident, but a repetitive cycle of reactions. There have been medication trials where I am not the same as I was prior to the setbacks. The concept of never returning to baseline is traumatizing and makes one fearful of future treatments.

    Then, how does one ever overcome the terror of trialling new treatments?

    Calculated Risks

    Taking risks is necessary with chronic illness. While it is not practical to be reckless, there is no possibility of getting better (short of a miracle) without chancing a treatment trial.

    The triggers are not consistent with my main diagnosis, Mast Cell Disease. For example, I tolerated NSAIDs fine my entire life. I used to eat Mortin and Advil like candy and on occasion took Aspirin. In the flare of 2015, that changed. My doctors and I made the decision to consider Aspirin therapy to combat my insanely high Prostaglandin D2 levels. Aspirin therapy is potentially dangerous to some patients. It is a common allergy even if it can reduce Prostaglandin levels. Despite the fact that I was in a massive Mast Cell Disease flare, we assumed it was a good decision to trial Aspirin therapy because a) my past history revealed I previously tolerated NSAIDs and b) the medication would be specially compounded into the pure drug powder with no fillers and preservatives to react to. Great, right? Wrong. It provoked a cascade of reactions that I did not recover from. This inconsistency may apply to a lesser extent to many chronic conditions. It renders any medication a trial a risk.

    Anxiety Relief 

    Anxiety is natural. To fear what has previously caused or could cause harm is engrained in human nature. It is how our ancestors avoided dangerous situations. Obviously there is a difference between productive anxiety and anxiety that has destructive tendencies.

    Patients with rare, lesser known diagnoses frequently receive the "it is all in your head" accusation from medication professionals. That stigma makes it difficult for it sufferers of rare, invisible illnesses to willingly admit their anxiety surrounding treatment trials, so much so that they repress the distressing emotions. However, recognition and confrontation is imperative in facing the scary, newly implemented treatments.

    From personal experience, it is important to remain calm when trialling a new treatment. There is no need to "borrow trouble" or to be convinced of disaster before it comes. Anxiety can produce extra symptoms that mask whether or not the treatment is working. Secondly, staying in a composed state is better for the unfavorable consequences too by making it easier to recover if things go awry.

    Mindfulness is described as "the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us". [ x ]
    Excessive anxiety is not conducive. It is helpful to be in tune to bodily signals and signs without focusing ALL attention on potential impending symptoms and reactions. Practicing mindfulness and other techniques is beneficial. 
    Keeping occupied is my #1 tip for relieving anxiety and diverting negative attention in nerve-wracking treatment trials. 
    It does not mean that the treatment will go perfectly, but staying distracted ensures there are no additional problems created. 
    Ways of distraction:
    • Reading
    • Adult Coloring
    • Jigsaw Puzzles
    • Television/Movies 
    • YouTube Videos 
    • Word Games
    • Crafts - Carding Making, Painting, Holiday Decorations
    • Writing 
    • Online Shopping (totally guilty, HA)
    • Skype/FaceTime with Friends/Family
    • Pet Therapy 
    • Baking

    Control What You Can

    There is little control in life with chronic illness, but there are aspects that we do have control of. Treatment is not to be taken lightly. We have the ability to choose what medications are used in treatment. Patients have the responsibility of thoroughly researching to make decisions and to prepare both the body and mind to give the best chances of healing.

    It has been a decent chunk of time between now and my last medication trial. After my out of state appointment with the oncologist who specializes in Mast Cell Diseases towards the end of this month, I am due to try another medication. It will be the last non-invasive option I have yet to embark on. This is definitely not my first venture into uncertainty, nor will it be my last. I am continually learning how to overcome the trauma of scary treatment trials for the hope of improved mental and physical health!

    "He who observes the wind will not sow, and he who regards the clouds will not reap. As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything. In the morning sow your seed, and at evening withhold not your hand, for you do not know which will prosper, this or that, or whether both alike will be good." - Ecclesiastes 11:4-6

    Monday, July 10, 2017

    The Sunshine Blogger Award

    Thank you, achronicvoice, for the nomination. My blog has been a little quiet lately. This is the perfect post to ease back into more frequent posting!

    About the Sunshine Blogger Award:

    It is a nomination given to bloggers by bloggers. If someone nominates you, it means that you’re one of 11 people whom they find inspiring, and brings sunshine into the lives of your readers. If you decide to continue the tradition, then follow these simple rules!

    Here are the rules for the Sunshine Blogger Award:

    • Thank the blogger who nominated you and link back to their blog;
    • Answer the 11 questions the blogger asked you;
    • Nominate 11 bloggers to receive this award and ask them 11 new questions; and
    • List the rules and display the Sunshine Blogger Award logo in your post and/or on your site.

    1. What is your greatest fear in life?

    My greatest fear in life is to have loved ones die. 

    2. What is your biggest dream or ambition in life? 

    An ambition is to become a Christian counselor with a subspecialty in chronic and terminal illness. 

    3. What are your hopes for the future? 

    In the future, I hope to have my life back with improved health and the means to partake in society without potentially deadly repercussions from the exposure to triggers (perfumes, cleaners, foods, etc.) because of Mast Cell Disease. 

    4. Where are you on your journey towards acceptance? 

    The journey towards acceptance is one that has no end. My goal is no longer acceptance. To me, acceptance signifies succumbing to this illness and not actively seeking a way to get well again. However, I am steadily learning how to be happy and content despite my state of health. 

    5. What about a healthy person do you envy the most? 

    Overall, I envy a healthy person's ability to be productive in the way I wish I could be. They can independently exercise 6 days a week while also managing a social life, education, and career. 

    6. What is the best lesson you’ve learned from living with chronic illnesses? 

    The best lesson that I have learned from living with chronic illness is that the tough circumstances emphasize the importance of maintaining a strong faith.  

    7. Of all the different kinds of pain you experience, which do you find the most unbearable? 

    The most unbearable type of pain is when in a severe mast cell reaction, as it has many different pains occurring simultaneously. There is nothing more distressing than the incessant burning like someone has lit your organs on fire, "sunburnt" flushed skin, impending doom, chest pain from tachycardia of 200+ beat per minute, crushing bone pain, and GI pain at once. 

    8. What do you find most beautiful about life? 

    The most beautiful aspect of life are those moments where you can just see God at work, like miracles both big and small, support from others, acts of altruism, feeling prayer, etc. 

    9. What is your biggest strength, and how does this help you cope with your everyday life? 

    I am not sure if it is my biggest strength, but I do have a great pain tolerance. That is definitely handy in every day life when allergic to pain medications, NSAIDs, Tylenol. Try enduring sepsis without any pain control or undergoing a bilateral bone marrow biopsy, GJ tube placement, Hickman line placement, and GI biopsies with no medication for pain afterwards... 

    10. What is your biggest weakness, and how does this hinder your everyday life? 

    My biggest weakness is that I am too cautious when it pertains to my illness. Although I have good reason from past experiences, I overthink the pros/cons of each decision and how it will impact my health long term. It prevents me from taking chances. 

    11. What is one thought that you rarely vocalise, because people brush it off or tell you off?

    The first thought that comes to mind: It angers me when those blessed with good health abuse their bodies by eating unhealthily, abusing drugs or alcohol, not exercising when they should. There are sick people who do not have that luxury. 

    My nominees for the Sunshine Blogger Award: 

    1. Emily from emilylofgren 
    2. Rebecca from strengthandsunshine 
    3. Shona from shonalouise
    4. Donna from februarystars 
    5. Keeya from hellsbellsandmastcells
    6. Shannon from shayweasel
    7. Brittany from asouthernceliac
    8. Amy from livingwithme
    9. Sophie from sophiesspace01
    10. Chelle from coffeeheartmind
    11. Rhiann from brainlesionandme

    My list of 11 questions: 

    1. What inspired you to begin blogging?
    2. Instagram or Twitter? Why? 
    3. If you could choose another "niche" for your blog, what would it be?
    4. You can travel back in time. What age would you be? 
    5. Professionally, what are you future goals? 
    6. Who is your biggest supporter of your blog and life in general? How do they keep you motivated? 
    7. What are your favorite song lyrics? Why?
    8. How do you promote your blog? 
    9. Most embarrassing moment? 
    10. What do you dislike the most about blogging?
    11. How have you changed as a person since starting your blog? 

    Again, thank you for the nomination! It is quite an honor. 

    Monday, July 3, 2017

    What To Expect During A Gastric Emptying Scan

    Pain contorted the face of a young girl as she entered the radiology room for her Gastric Emptying Scan. Fear and uncertainty swirled in the pit of her stomach, along with last night's dinner. The nurse stated that the test would take the length of one movie, at the least. The table was prepped for a Thanksgiving feast complete with scrambled eggs laced with radioactive material.

    That description was me on the day I was diagnosed with Gastroparesis several years ago via a Gastric Emptying Scan. The test was completed towards the beginning of my health journey. Due to fear of the unknown, I was scared. I had not known what to expect. Had I had someone preparing me for such a test, I would have come to the realization that those feelings were so unnecessary! 

    "What is a Gastric Emptying Scan?"

    A Gastric Emptying Scan (GES) is a medical test that calculates the length of time it takes of the stomach to empty its contents into the small intestine. It uses radioactive dye that the patient consumes in a meal and an x-ray camera. It differs from a standard x-ray in the fact that it tracks and measures the radioactive material as it is digested. 

    "What symptoms are indicative of the need for a Gastric Emptying Scan (GES)?"

    • Nausea 
    • Vomiting
    • Bloating 
    • GERD - Reflux, Heartburn
    • Constipation 
    • Diarrhea 

    "How does it work?" 

    Step 1: Eat a meal with radioactive dye
    Radioactive material is easily visible to the scanner. The substance is introduced into a meal provided by the hospital for the Gastric Emptying Scan. The patient is expected to eat the meal within five to ten minutes.
    "What meal contains the radioactive dye?"
    • Eggs 
    • Eggs with toast 
    •  Oatmeal
    The bulk of the eggs with the toast is ideal for the test, as it closely depicts a typical full meal. The dye does not alter the taste of the meal. Water is allowed. 

    Step 2: Scan 
    Once the meal is ingested, the patient is directed to lay under an x-ray scanner. The patient lays on a hard, metal table with the scanners above and/or below it. The scanner is not noisy, nor is it enclosed. It is totally silent and the square contraption is moved over the stomach area.
    "How long does is the scan?"
    The Gastric Emptying Scan can taker place a variety of ways. The average Gastric Emptying Scan is 3 to 4 hours, consisting of a series of images every half an hour to an hour. Depending on the facility, patients can remain under the scanner the entire duration of the test or they may leave the radiology room and come back long enough to snap another image.
    Other scans take a total of 8 hours. In my experiences, the lengthier scans like that have been done at larger hospitals, like the Mayo Clinic where the technology is updated. For those, I was not required to lay for hours on end. Once I ate their meal with the radioactive dye, I was able to leave after receiving a schedule of the times to return for the images. Each image was a quick, standing scan that took all of 5 minutes. At the halfway point of the test, I was advised to leave to eat another meal without the radioactive dye. My family and I went to McDonalds. How healthy. 
    Example of Scanner
    Step 3: Results 
    The scanner follows the food laced with dye to calculate stomach motility. It is visible on a computer. 
    My first Gastric Emptying Scan showed severe Gastroparesis with a halftime of over 6 hours. The results will be given to the prescribing doctor and discussed at a later appointment. 

    Computer Calculating Digestion

    "Do you have any tips?"

    • Wear comfortable clothes that have little to no metal. 
    Dress as if you are going to bed, like in yoga or sweat pants and a t-shirt. Also, dress to accommodate symptoms (i.e. bloating) that can be provoked from eating the meal.

    • Bring a cozy blanket or pillow. 
    Like other radiology scans, they are lengthy. You may be in a dark room on a hard, metal table for a few hours. The hospital provides both, but their blankets are generally scratchy and pillows flat. Having your own from home is always superior! 

    • Bring a neck brace for cervical-cranio instability. 
    If you have cervical-cranio instability as a result of Ehlers Danlos Syndrome, considering bringing a neck brace for extra support in case the metal table provokes issues. 

    • Ask about television/movie options. 
    A GES is rarely less than 2 hours. Laying still under the scanner is incredibly boring if you are not doing the scan where you can leave and return intermittently just for the picture. Watching a movie for the duration of the test makes the time pass more quickly. Inquire beforehand about the DVD and television options. 

    • Review your medication list. 
    Certain medications do effect stomach motility, which can lead to inaccurate results. Consult with your medical team about the medications that need to be discontinued and resumed after the scan. 

    • Apply anti-nausea techniques. 
    A meal with radioactive dye is consumed for the GES. Eating alone can cause symptoms. There is a chance that the addition of the dye can compound those symptoms. Do what you can to combat symptoms, as the test can only be completed if that meal stays down. Take permitted anti-emetics, use SeaBands, or mediate! The test is unpleasant enough without having to repeat it. 

    • Be prepared with rescue medications for Mast Cell Disease. 
    Mast cells are finicky little suckers. Eating, the process of digestion, and the radioactive dye can be triggers. It is wise to ensure rescue medications are available to treat reactions if they do come (i.e. Epinephrine, steroid, H1 and H2 blockers). I did not experience significant exacerbation of my symptoms in comparison to a regular meal, but I had never had a severe Mast Cell Disease reaction at the time of my scans.

    • Remain calm. 
    There is no reason not to be calm. I have had about 5 Gastric Emptying Scans and it is an overall easy test.

    Thursday, June 22, 2017

    You Know You Have Mast Cell Disease When...

    Do you have Mast Cell Disease? Yes? Welcome to the club. I wish I could say it is a cool club to belong to because it most definitely is not. However, joining it does make you privy to a new way of life. That is, the life of the allergic with reactions to foods, chemical scents, and who knows what.

    Life with Mast Cell Disease is challenging. It is not entirely bad though. Antihistamines, epinephrine, and a daily dose of humor inevitably saves the day. So, you know you have Mast Cell Disease when: 

    Nurses stare in disbelief as you recite a list of your allergies. 

    And they can never all fit on just one red allergy wristband.

    You keep the local drug stores in business.  

    The dose directions on the back of antihistamine boxes do not apply to you. 

    Everything stinks. 

    Other people would not smell sh*t if it was shoved up their nose. 

    You never have to buy blush again!! Your cheeks are forever flushed a shade of pink. 

    Stop, drop, and roll does not work when it is your insides that are on fire.

    You give a science lesson when asked to explain your disease. 

    Histamine, prostaglandins, Diphenhydramine, and Loratadine are common terms in your vocabulary. 

    You are the poster child for the EpiPen ads.

    Bath and Body Works is your worst nightmare. 

    And you run past Yankee Candle and Hollister while shopping at the mall. 

    Well. That's swell-y. 

    You second as a detective, searching for what triggers have changed. 

    Breakfast, lunch, and dinner consist of the same two foods. 

    You can chug dye free liquid Benadryl from the bottle and not be fazed. 

    Friends are jealous of your tolerance. 

    Hypoallergenic is another word for sorcery. 

    A successful grocery store trip is when you do not get stuck in the checkout line behind the old woman that is wearing too much perfume.

    You never leave your house without a VogMask. 

    Bone pain is brutal. 

    Treatments work...until they don't. 

    Medical professionals think you are neurotic when you request preservative and filler free medications. 

    "Is it really possible to react to that?" YES!!!

    You know more than your doctors, yet you do not get paid for it. 

    Cro-mo-lyn, for the win. 

    You can relate to babies on a new level because you drink their formula. Yum, Elecare and Neocate Jr. 

    Impending doom. 

    ER runs and 125 mg of Solu-Medrol. Hello, moon face. 

    During hospital admissions, you bring your own "safe" supplies. 

    Bedtime prayer: "Now I lay me down to sleep / I pray the Lord my next co-pay's cheap / If I should die before I wake / I'll know that high histamine treat was a big mistake" 

    You learn not to take the being alive for granted.

    The good moments are cherished, faith strengthened.

    Struggles reveal the friends and family that truly care.

    You surround yourself with a loving support system.

    You learn that life with Mast Cell Disease is hard, but not impossible!