🦓 I am joining the EDS Awareness Month Challenge – May 2020.
Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. 💄
Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!
If you haven’t seen Netflix’s Diagnosis by now, you’re definitely missing out! My husband and I started watching it a few months back and we instantly were hooked. For years I have been classified as a medical mystery. So many different doctors told me: “it is in your head” or “it’s just a muscle sprain” and the occasionally “I honestly don’t know what we’re looking at.” I had shingles at seven (rare at that age) which confused a lot of medical personnel, but this was nothing that was to come.
Throughout my childhood I was seemingly healthy. I had chronic nosebleeds most summers, my ankles rolled so many times I lost feeling in them, and my knee caps started dislocating around the age of 12, but other than those issues I was pretty healthy. I had my tonsils and adenoids removed around the age of eight for chronic inflammation and I had ear tubes put in as a baby because of ear infections. Other than being overweight I looked and acted like a normal child.
It started with my ankles. From the time I could first remember I often rolled and twisted my ankles. I had such instability in my ankles that my ankle became numb from how many time I rolled them. Then fast forward to 2003. I did gymnastics and was always super flexible. I was at a K-Mart reaching up for an Easter Basket when I experienced my first knee dislocation. I’ve never experience such pain in my life. Unfortunately many more dislocations in both my knees and hips would follow.
Around sixteen my hands and feet started turning blue especially in cold environments or stressful situations. I went to the ER once for “diabetic” like symptoms in my feet (they were blue and numb) and was discharged with a migraine. My primary care physician (PCP) diagnosed me with Raynaud’s Syndrome and I was told to try to limit my extremities to cold temperatures. I bought some special gloves for when the temperature dropped, but we went forward not knowing this was a clue to the puzzle.
Around the age of twenty-two, I started having major issues. It began with an allergy problem. I would have anaphylactic reactions out of now where and to foods I have had multiple times with no problems. I lived in fear as I was terrified that whatever I ate could cause my throat to close. I had one emergency room visit where they administered epinephrine and one allergy clinic emergency where they administered it as well.
I had extensive allergy testing done and thought I had something called mass cell activation disorder. Based upon a blood study the allergy specialist said that I have higher amount of basal cells or the cells that cause a reaction to allergen. I kept Benadryl and my epi-pen on me at all times. Despite testing several allergens, no food could be pin pointed as a trigger and I was thought to be allergic to some unknown spices.
Fast forward a few more years I had a skin and bone marrow biopsy done after I went to see a dermatologist for urticaria and allergic reactions. My skin basically overreacts to stimuli. I was diagnosed with idiopathic anaphylaxis. My bone marrow biopsy came back normal, so they ruled mastocytosis out, yet I am still having allergic reactions. I was told by one doctor that I have irritable bowel syndrome and maybe that was causing these reactions, but since becoming pregnant in January 2018, I have gone into a bit of remission.
I started having gastro problems in 2014 (around 22 years of age). I had chronic diarrhea and a lot of nausea with vomiting. I lost a lot of weight unintentionally because I was so sick that summer. I had a colonoscopy done and all that was reported was inflammation. I am picky about what I eat because I am afraid of the outcome. I started cutting out heavy sugars, fats, and spicy foods. I later went on to have such bad abdominal cramping that it caused me to almost faint. I had my gallbladder taken out at seventeen from rapid weight loss and from cutting out fats from my diet that caused gallstones, so I knew it wasn’t a gallbladder issue. My PCP prescribed dicyclomine for stomach cramping and diagnosed me with what he though was irritable bowel syndrome. Another doctor I saw said he thought I had diverticulitis because of the extreme pain I was in. I remember driving to the hospital and then changing my mind and pulling over to ride the pain.
While I was ongoing my allergy and gastrointestinal issues in fall of 2014, I stood up and immediately felt faint. I went to the bathroom and I looked white as a sheet. I felt clammy and my heart felt like it was palpitating out of control.
I had previous “attacks” where my heart would beat so fast for no reason. I went to the hospital once when I was sixteen for it and they ruled it as an anxiety attack, although I disagreed at the time. I know anxiety and I was watching a movie in a hotel room complete relaxed at the time.
I felt beyond sick. I collapsed to the ground and told my boyfriend at the time I needed to go the emergency room. I felt like I might die. I began feeling nauseated and I knew it was serious. Upon arriving I told them I was having chest problems. I thought maybe it was a heart attack. I was already crying because I could feel my heart. It pounded. It felt like it would explode. They did an EKG right away and called the cardiologist on call. They said it was atrial fibrillation. The doctor had never seen someone my age with it. They tried administering drugs to get my heart back in rhythm but to no avail. I consulted with my dad (a nurse) and we agreed I had to be cardioverted back. Basically my heart need to be shocked. They put me to sleep with an anesthetic and I woke up not long after with a pain in my chest but a normal heartbeat.
I had a couple more episodes after this one but no where as severe. I was tested for POTS because of the problems I had feeling faint upon standing and I had almost passed out several time while using the toilet. Despite matching on a lot of the symptoms the test came back negative.
Muscle Pain & Weakness
This has been the most persistent symptom of them all. I have pain every day in my back and neck. I thought when I had my operation (posterior fossa decompression) that I would be better, but it’s much worse. It started in the summer of 2015. My neck and back would put me in tears it hurt so bad. My PCP at the time told me it was a muscle sprain. I tried muscle relaxers to no improvement. Doctor after doctor told me the same thing. Must be a sprain. I finally received a MRI and my doctor failed to mention that the results stated I had a cerebellar tonsil herniation. She told me that it shouldn’t affect me and basically it’s all in my head, so I fired her immediately and went to a neurosurgeon that specialized in Chiari Malformation (after doing extensive research about what cerebellar tonsil herniation meant). Combined with the other symptoms I will further talk about in this post, with the herniated tonsils was too much to “be in my head.” I continue to have major cervical instability pain that makes everyday a challenge for me, but I have great days and I have bad days and keep progressing to hopefully a manageable pain future.
In that summer of 2015 I began having severe short term memory loss. I used to have such an amazing memory and was quick to recall facts, names, etc., but now I was constantly arguing with my boyfriend at the time about things I didn’t remember. Where did I put my keys? Did I take my medicine? I couldn’t remember doing the most basic of tasks. It was terrifying. How would you feel if you couldn’t remember a good portion of your actions? I started having panic attacks because of what was happening.
Slurred Speech & Aphasia
In addition to the memory issues, my speech began to slur. I wasn’t even aware of the issue until I called my dad and he asked if I was intoxicated. I began to have difficulty speaking my thoughts. A sort of aphasia, I guess you could call it. I often confused words or had a difficult struggle in getting out my thoughts. Going from a scholar to this was extremely defeating. I was in what was supposed to be my senior year of college when this hit. It took a toll on my grades and my self-esteem. I was terrified. As we were formulating ideas (before the Chiari results of the MRI), we were thinking possible brain tumor. Was this the beginning of the end for me? I began to mourn the person I once was. I went from running 5Ks for fun to being a lifeless shell of my former self.
The migraine were extreme. I’m talking full on nausea, ocular issues, light sensitivity. I basically lied in a dark room praying for it to end. I couldn’t open my eyes. The pain shot throughout my head and felt as if it were going to explode. I began to see a neurologist. I tried several anti-migraine medications: zomig, amitriptyline, rizatriptan, and others. The migraine were almost daily. I would have to miss class and basically laid there in agony. Too sick to eat, in too much pain to move. I currently am going through a remission of this symptom ever since getting pregnant with my son. It’s been a miracle from suffering so frequently to having them so rarely and I hope it’s something that will continue this trend.
My balance was beginning to become terrifying. I would suddenly feel as if I would fall over when walking normally. I was on high alert as I was afraid I may fall at any moment. It got to be so bad I’d use a walker to make sure I didn’t fall right before my surgery. I felt like this was an all time low in my health. Here I was. I was supposed to be a healthy, happy twenty-three-year-old and I was using a walker to get to my college classes. I was humiliated, but more so terrified for what was to come.
Another symptom that appeared mysteriously was found at my eye exam. I ended up having vertical nystagmus that had previously not been seen. I later found out that it was a symptom of Chiari Malformation that had not been caught before. It was very slight, but sure enough my eyes made uncontrolled repetitive movements up and down. Nystagmus can indicate central nervous disease, so I was on high alert after I was told I had it.
With all of these symptoms coming in different waves, I knew it was time. I needed answers. I am tired; tired of the doctors juggling different diagnoses and medicines back and forth. It’s physically and mentally exhausting having to explain myself over and over and people not understanding half of what I go through; Not understanding why I can’t make it to their event and why it’s hard for me to confirm plans and how hard it is for me to put on a mask, pretending everything is okay. I’m tired of answering “I’m fine” or “I’m okay” because explaining that my chronic illness is eating away at me everyday is too long and difficult to mention. I’m tired guys.
I decided to email the doctor from Diagnosis and she led me to the online Facebook support group that aims at trying to diagnose you. And… I got my answer. All this time of not knowing and I’m fairly certain it’s correct and I mean that I am 90% certain. Ehler’s Danlos Syndrome (EDS) with Mast Cell Activation Disorder and Chiari Malformation, both side conditions of EDS. In the past I thought I might have this, but I was told there was no test for it and that is incorrect. I have all of the matching identifiers of this connective tissue disorder.
I couldn’t believe it. I had heard about EDS being in the spoonie community, but I had never really pinpointed it as the cause of my many issues. I took the Beighton Scale Test and I am a 8/9! I am making an appointment soon with a geneticist to have a blood test done and to determine what the odds would be of carrying on my Hypermobile EDS on to my son and future children. I can’t help, but feel comforted that I have a label now. Maybe the doctors will finally take my pain seriously with this diagnosis.
My future is uncertain, but I strive to be one thing: happy.
Yesterday I checked into the Metroplex Adventist Hospital for my bone marrow biopsy. I though I would share my experience for those of you that may have one coming up, need to inform a friend of family member, or are just curious as to how it went. Everyone is different when it comes to pain and healing, so please keep that in mind. To begin, a bone marrow biopsy is done to evaluate blood cell abnormalities and other diseases in the patient. I had mine, in particular, to test for mast cell disorders as I have struggled with unexplained allergic reactions with no triggers.
0800 – Caleb and I arrived at the inpatient surgery center and got checked in. I changed into a hospital gown and socks and prepared for the hours to come.
0830 – The nurse came in and attached me to the the monitors. I had an EKG done to evaluate my heart (due to past heart trouble – atrial fibrillation & tachycardia) and the dreaded IV was put in after one painful failure.
1030 – My mom arrived to the hospital to wish me well. I was supposed to have already been taken back, but the doctor had been working on the same patient since 0730, so apparently some complications arose. Waiting is the worst part; the nerves grow, my heart raced, and I kept playing over and over about what was ahead.
1100 – I finally was taken back. I was explained everything that would happen. I would be sedated, but might feel some pressure and the pain of the numbing sting. I went in to the Cath Lab and the completely took off my gown (that was a surprise to me), but covered me with drapes. I had an oxygen tube in my nose and was hooked up to all the necessary machines. The anesthesiologist told me he would administer the medication. I didn’t feel it immediately and began to worry it wouldn’t make me go to sleep. I told the ladies that were prepping everything that I haven’t felt the medication, they assured me the doctor wouldn’t start the procedure until I was sedated. I was “blind” since my glasses were confiscated, but I could see the outline of the needle for the lidocaine. I was trying my best to stay calm. Then I went to sleep. After that I didn’t remember a thing. Whether I was sleeping or not, I don’t remember feeling a thing until after I was awake in the recovery room.
1215 – I awoke back in my recovery room alongside Caleb and my mom; the first thing I did when I got back to the room was pucker my lips for a kiss from my man. I was a little loopy coming off the sedation leading me to make silly little videos on snapchat and saying I wanted In-N-Out over and over again. I began to feel the pain in my hip. The nurses said I had to stay for 2 more hours and I had to eat before leaving.
1300 – I was give morphine for the pain. I told the nurse it was hurting and they made me lay on my back to compress it, instead of my side (which hurt even more).
1330 – I was given a veggie burger (I told them I didn’t eat meat and they happily got this burger!) and baked crisps for lunch. I really wanted In-N-Out, so I nibbled at it and split my meal with Caleb.
1400 – I was wheeled out to Caleb’s car and discharged!
After being discharged, I went to my much needed In-N-Out; I really wanted to just get it to go, but my mom was going to head out after that, so we just ate at the restaurant. On the way home we stopped by the primary exchange to pick up my headache medication as I left the hospital with throbbing in my temples. The day of the procedure it was very painful to walk and I needed assistance from Caleb to get from place to place. This morning I awoke with a little bit of pain and had sharp stings here and there, but overall the healing seems to be going well. I can’t lift anything for 48 hours after the procedure. I can finally shower tonight and take off the bandage. Some leakage is evident, but that’s normal unless it has a green hue or looks like pus. My results should be in next week, so now I have to make an appointment with my provider to go over them. I am eager to see what the bone marrow reveals. I’ll keep you updated!
As promised to my instagram followers, here is my What’s In My Bag? Spoonie Edition! As a sufferer of multiple chronic illnesses, it is most important that when I venture from the comfort of my own home that I bring certain essentials to help me survive the cold, harsh world ( a little dramatic, I know). Above are just a few items that are my necessities for a successful outing; one that I can manage pain for the most part and have everything I could possibly need for a spoonie emergency.
My Bag: Mossimo Supply Co. miniature backpack from a while back
What’s In My Bag?
Mylan Lidocaine Patch 5%: I use these pain patches for my lower back, where my nerve pain drives me crazy at times. Although, I don’t use these everyday, when I do they tend to numb the area slightly enough to provide a little relief from relentless nerve pain.
“Mylan Lidocaine Patch 5% is a prescription medicine used to relieve the pain of post-herpetic neuralgia, also referred to as after-shingles pain.”
“Real Time DAILY Relief Lotion offers hydrating moisture for your skin with Homeopathic benefits. Made with 15 of Nature’s Ingredients including Aloe Vera, Arnica, and Nutmeg, Real Time DAILY Relief nourishes the skin while relieving stiffness and pain. It supports the regenerative processes of your body and provides the relief you need on the daily. With a fast absorbing formula, invigorating light-menthol feel, and great smell, Real Time DAILY Relief is perfect for everyday use!”
Pain Management Medications: Dicyclomine used for IBS related symptoms such as severe stomach pain and diarrhea, Tramadol my prescribed pain medication, I’ve been taking since 2015 to help manage my chronic back and neck pain, Methocarbamol – to help with muscle spasms (back), & Zomig, my migraine medicine that I have found myself using weekly.
Advil: I try to limit the NSAIDS I take, but just in case the prescribed combination isn’t doing it
Mylan Epinephrine Auto-Injectors (EpiPen®): I have been administered epinephrine three times (one in hospital, two in clinic) due to anaphylaxis and near-anaphylaxis symptoms, so keeping these bad boys on me at all times can be a lifesaver for my reactions.
Allergy Relief – diphenhydramine (aka Benadryl): I never know when I am going to have a mast cell reaction. Since being diagnosed with MCAD (mast cell activation disorder), I have weekly reactions that results in severe hives, diarrhea and intentional upset, and can sometimes even lead to breathing difficulties.
Go-To Skincare Very Useful Face Cream: I got this product in my Be Kind To One Another Box (BKTOAB) from Cass and I love how light and refreshing the formula is. It makes a perfect base before applying foundation and leaves my skin feeling gorgeous!
“This is face cream that is as much about anti-oxidants as it is moisturisation, because anti-oxidants are just as important. They stop free radicals (found in UV rays, smoking, environmental pollutants, toxins) attacking your skin, which is the main cause of ageing in the shape of wrinkles, loss of skin elasticity and suppleness. And since we get 50-80% of our free radical damage before we turn 21, there’s good reason to be incorporating anti-oxidants into your skin care as early as possible, (and for as long as possible.)”
Wet n Wild CoverAll Créme Foundation: Finding the fight foundation has been a long time problem for women. What’s the right shade? How much coverage do you get? Does the foundation fade? Is it matte or sticky? So many questions and so many foundations tried and this one has been a favorite; It’s cruelty free, light on my face (not super heavy like Kat Von D’s Lock It Foundation), and covers/blends well. With it being super affordable, it’s definitely worth a try!
“Acne scars? Dark spots? Under eye circles? We’ve got you covered! Our cream foundation does it all. This cream makeup blends seamlessly for all-day wear, and its flawless, lightweight formula provides buildable, medium-to-full coverage that evens out skin tone and conceals imperfections. Absorbing powders rid excess oils on the skin’s surface, leaving behind a soft, satin-matte finish. Contains VisiBright™ Technology: a skin-perfecting complex that reduces the appearance of wrinkles and dark spots, while hydrating skin’s natural collagen for a rejuvenating lift.”
Oil & Wind Silicone Beauty Applicator: I previously was using a Beauty blender, but was annoyed at the time it took to clean, the breaking of the sponge, and the amount of product wasted. This Silicone applicator has completely fixed all those problems! It’s extremely easy to use and doesn’t absorb any of the product! This ultimately saves money and is less messy! (Also doesn’t irritate my skin like the BB has in the past)
e.l.f. Bronzer – I’m very much in to bronzy looks, so this palette was a steal at only $4! It has made its way into my everyday makeup look.
“This bronzer creates a healthy looking glow all year round! The sheer soft powders provide the perfect hue of color. Blend all 4 colors together to achieve a blend of perfection or choose your favorite color.”
“Professional makeup artists and beauty mavens will appreciate our Sculpt and Blend 2 – 10 Piece Makeup Brush Set. With face and eye brushes, the versatile collection was designed for use with liquids, creams, and powders. The full range of dual-fiber cosmetics brushes tackles a wide variety of application needs, from applying blush, bronzer, and powder to lining, defining, blending, and smudging to achieve a flawless look. Cruelty Free Synthetic Duo Fiber Brushes”
Natural Mineral Blush by Dusty Girls: in Golden Delicious – This was a BKTOAB item from Australia that I absolutely fell in love with. It has been my favorite all time blush that I have ever tried. The blush is really pigmented and perfect for my olive skin tone!
“Softly contour your cheeks with this versatile shade for a flawless, matte finish. Pressed with a blend of gold and terracotta tones to brighten your smile and enhance your complexion.”
Brow Wiz® by Anastasia Beverly Hills: I have extremely thin brows, so filling them in is something I like to do for a confidence booster. This has been my favorite brow product thus far, although the wand broke over time, but at least the pencil still is perfect. I had to go to the website to learn how to properly apply the Brow Wiz to get the perfect brows.
“An award-winning ultra-slim, retractable pencil that creates precise, hair-like strokes. Use Anastasia Beverly Hills Brow Wiz®‘s fine tip to spot-fill areas where brow hair is sparse, and the custom spooley end to blend for a flawless finish.”
Better than Sex Waterproof Mascara: I discovered this mascara right before my engagement in October of last year and have loved it ever since. This mascara makes my lashes look so amazing and it truly is tear proof!
“Go ahead and cry happy tears, Better Than Sex Mascara is now WATERPROOF! Our iconic hourglass-shaped brush unlocks the volumizing formula that thickens, lengthens and curls for the most extreme, mind-blowing lashes. One coat and lashes are full, defined, and stretched to unbelievable lengths. Two coats and lashes look even more luscious, curled, and dramatic. Three coats and you’ve achieved the most intense, voluminous, waterproof lashes possible!”
“On a walk through the Sicilian countryside we came across a grove of tangerines that inspired us for this mouth watering fragrance. Juicy citrus, fragrant blooms, Mt. Etna in the background and a warm summer breeze all around us. Tangerine, mandarin, peach, bergamot, jasmine, mango, black currant, musk, vanilla.”
Everyone Needs These:
Guess Sunnies: My dad bought me these on sale at the exchange and they’re perfect for protecting my baby blues.
Spare Change: for those 99 cent deals that charging the card is out of line.
Just in Case:
Everyday Good Emoji Bandage: I love these little bandages that Cass sent my in my Be Kind To One Another Box earlier this month. I have adhesive allergies, so these bandages are perfect for sensitive skin and their good for the environment too!
“Just like the Nude range, our Emoji Biodegradable Bandages break down in 2 years and decompose completely in around 4. They’re made using 15% recycled materials and the packaging was carefully sourced to be 100% from recycled material. It’s end to end as sustainable as we could find!”
Fresh Nap Towlette: one word: germs.
Little Buddha: I bought this little guy back in 2012 on Spring Break in New York City (China Town) and since then he’s kind of my lucky little charm that I bring with me when I take my college tests a few years now. He’s even made it through being sucked up in the vacuum, so I’d say he’s pretty lucky.
Diet Coke: Although I am now limiting my addiction, I still indulge in a couple of precious fluid ounces of Diet Coke a day. No, Coke Zero is not the same nor better.
Extra Hair Ties: I never know when my hair will act up becoming unmanageable or I have had several ties actually break while in my hair (thick hair problems)
I hope everyone has a great final week in April! It’s definitely been a rough couple of days this past week, but I am trying to keep pushing forward. I am most eager to graduate on May 19th and to finally be rid of my undergraduate campus! So close, yet so far.
Another day, another attack. I started this past Wednesday thinking it would be an average, uneventful day, as most “hump days” are; Mid-way through my cell biology laboratory, I soon realized that this would not be the case. My episode initiated with me having an extremely difficult time concentrating: I tried my hardest to stay on task, but simply could not focus. I read the same line again and again, but couldn’t comprehend its meaning. My chin began to feel numb with a dull burning feeling (paresthesia) that quickly spread to my entire face and head. It’s relatable to the feeling I get when my foot “falls asleep.”
I went to the bathroom to examine myself, thinking it could possibly be an allergic reaction (my face sometimes feels hot and numb-ish during a reaction), but my face looked normal with some minor flushing. I became confused and tried to fight the urge to cry as anxiety flooded over me. I returned to class, asking my teacher how much time remained on our experiments. He told me that they would take the whole alotted time because we were fitting two experiments into one lab session. I expressed to him that I wasn’t feeling good and needed to make a phone call; luckily my teacher has a little knowlede about my health problems and therefore is most understanding with my condition and needing to take breaks.
I called my dad, a nurse of over twenty years of experience, and explained to him what was going on. I began to cry stating that I didn’t feel right and explaining my reoccurring symptoms. I began to feel faint. My dad thought it could be a possible allergic reaction or an anxiety attack, but I didn’t feel panicked. My breathing and pulse seemed too slow (to me), feeling as if I wasn’t receiving enough blood to my head. I splashed water on my face, took deep breaths, and went back into the laboratory to grab a snack and water from my bag. At this point I had red splotches on my face and chest from being stressed (my mast cell activation disorder causes me to break out during stressful situations and hormonal changes).
I apparently looked unwell as I was greeted with a face of concern. I felt like I was going to pass out and told my instructor. He instantly became worried and left the lab with me, asking me to sit down while he called the principal of our campus. He asked me if I needed an ambulance and I told him no, although now I wish I had just gone to the emergency room, given the insight I have now. He didn’t know what to do and was told to call campus police so that they could make sure I was okay and help escort me. I had called my mom and asked her to come get me, although I was hesitant because I didn’t know if this was going to pass soon or not and I hate to miss out on classes and labs. The police were most kind; they got my information, talked to my mom on the phone, giving her directions, and they escorted me to the lower level of the building, carrying my bags. I continued to have a hard time concentrating and I was taking awhile to answer easy questions, as my thoughts slowly gathered. I began having an intense pain at the base of my skull, almost as if I had a headache or migraine in that location, and prayed that this episode would pass soon.
My mom was finally able to pick me up and drop me off at her house (I live an hour and a half away) making sure I had lunch, a drink, and comfort before heading back to work. I continued to feel strange until I fell asleep; when I awoke an hour later I felt better, but pretty drowsy and fatigued, exhausted from this ordeal. I fell back asleep for another couple of hours until my mom came home from work and drove me back up to the campus to retrieve my car and drive home. This attack was similar to my episode a couple of weeks ago, except my heart felt like it was beaming and operating too slowly, instead of rapidly. I am puzzled as to what the source of these episodes is.
I wrote a message to my primary doctor the following morning describing my strange and frightening day. He returned my phone call a couple hours later, expressing the upmost concern. Firstly, after I explained everything, he has become increasingly convinced these attacks are related to some type of heart arrhythmia or malfunction. I have contacted cardiology and have an appointment to be fitted to wear a heart monitor for a couple of weeks in hopes of “catching” one of these episodes. The hope is that we can identify what’s triggering these symptoms I’m feeling and how we can manage them. He then proceeded to inform me that my stool sample results came back and indicated a high level of lymphocytes (white blood cells) in my stool with negative cultures, an indication of many different things that need to be addressed urgently. He advised me to schedule a gastrointerogy appointment as soon as possible to have some more testing.
It’s been a hectic couple of weeks with the girls (Mavis & Eleven) and myself being sick. I’m praying that things improve and that I can get some answers to this challenging puzzle! I additionally met with my new allergy specialist on Thursday afernoon, who ordered an array of blood tests to see what my mast cell levels looked like and if I have a spice-related allergens. He scheduled me to return to have a skin test performed that indicates whether I have an allergy to certain foods. He wants to test for mastocytosis and create a more efficient treatment plan (clearly what I’m doing currently is NOT working). In addition to my appointment with cardiology next week, I also meet with my new pain management specialist with hopes of managing my increasing nerve pain.
I had an extremely unpleasant Saturday night and early Sunday morning as I became awfully ill. It began around 10 pm. My fiancé and I just finished eating and were consuming ourselves in the disturbing, but enticing Black Mirror episodes when I began to have an allergic reaction. My reactions don’t really have a certain substance or food that causes me problems; instead it’s just when my mast cells decide to act up, often with foods I have eaten so many times before and have had no issues whatsoever. Mast Cell Activation Disorder causes my mast cells to react inappropriately including cardiovascular, dermatological, gastrointestinal, neurological, and respiratory problems when attacks occur. I unfortunately have had anaphylaxis to near-anaphylaxis attacks on several occasions and it’s terrifying.
This past Saturday I began feeling flushed and my heart rate began to increase. I went to the bathroom after feeling horrible stomach upset and began having what I call “allergy-related diarrhea.” I know this is probably too much information, but unfortunately that is one of the big symptoms of MCAD: severe diarrhea, intestinal cramping, vomiting, and nausea. I called my husband in to get me my Benadryl: my go-to drug when I begin having reactions. I was covered heavily in hives on my neck, chest, stomach, and back. I quickly took 50mg of antihistamine, but my pulse and heartrate were fast and I began to wheeze a little. I have had bad allergy attacks before and like to avoid using my Epipen unless necessary (as I must go to the emergency room), so I’d rather take 75mg of Benadryl than rush to the ER. I began to calm down and try to slow my breathing. I thought I was doing better. We finally headed upstairs around 12 am and something just didn’t feel right. My heart began to feel pained and heavy. I clutched my chest in pain and then I began to feel extremely sick. My whole body felt numb and felt like it was burning (kind of like how my lidocaine patches make my back feel – numb, but like a slight burning/tingling sensation); I became extremely nauseous and I got tunnel vision. I told my fiancé I need to go to the ER. My heart began feeling like it was going to explode and just sputter out. I became most confused kind of rambling and I told my husband I need an ambulance. I never felt like this before. I was on the verge of passing out and Caleb said my skin was very cold to the touch. I felt so sick and confused. We got up and made our way down stairs as I was mumbling that I had to have my glasses, I needed my glasses repeatedly. When we got down the stairs, Caleb couldn’t find his keys. I sat down on the bench and started taking deep breaths. When my fiancé finally got his keys, I decided I wanted to try to go to bed instead. My heart rate had slowed a little and it was nearly 1 am.
I had never felt like this. The only thing I could relate it to is my atrial fibrillation episode back in 2014- I stood up and became faint with my heart beating uncontrollably fast. I wondered if my heart again went in to a-fib. I emailed my doctor the next day explaining what had happened and he called me immediately that day. He was extremely concerned that my heart had gone into another atrial fibrillation episode. He has put in orders to see another allergist that can do more definitive testing and can hopefully test for reactions to spices. He also put in another order for a heart monitor (my fourth time wearing) to see if I have developed an arrhythmia or am in tachycardia often. Finally, he put in labs for bloodwork just to make sure everything looked okay.
I have known that there has been issues with my heart since sixteen when I went to the hospital for unexplained tachycardia. My meme (maternal grandmother) has a history of chronic tachycardia and she actually ended up having a heart attack recently. My mother also has some heart issues: a murmur and a possible infarction (mild heart attack). I am just praying that I end up making it okay. I want to have a future ahead of me and I would like to have children eventually, so I being healthy (and finding answers) is my number one priority.
I have a hard time explaining to people that I will not get better. This is only going to get progressively worse, if anything, and I am in pain everyday. Most of the students I go to school with only worry about making it to Friday, so they can party on the weekend. They complain about having to study, while here I am not sure if I am going to make it through class because the pain is too bad. I write this from my couch, heat pad on high on my back, neck brace on with my Real Time Pain Relief MAXX ointment lathered on my neck and back praying that this pain will pass quickly. I am on methocarbamol, a muscle relaxer, and am trying my best to only take one tramadol a day. I have lidocaine patches that I wear 12 hours on (although they don’t ever stay on that long!), 12 hours off on my lower back. I take tylenol and advil daily in addition to these other medications to try to alleviate anything. The pain is the worse thing having to deal with, but I also have weekly allergic reactions. Last Wednesday I had a horrible reaction that left me wheezing, covered in red splotches, and horrible gastrointestinal discomfort. I try my best to push forward and to see the best, which I have so much to be thankful for, but sometimes it’s hard to stay focused. I also suffer with depression and anxiety. The brain’s way of processing pain is similar to depression, so it definitely can have an impact on my mental health. I have had to take a year off in total from college to deal with this and it’s something I’ll have to fight everyday for the rest of my life. I am so incredibly blessed to have a partner willing to stick it out with me and be not only my best friend and husband, but my caretaker too for days that I can’t get by or nights that I come home with tears.
I want to create a safe place for people suffering, not only with chronic illnesses, but with mental health as well. We are in this together. Please feel free to comment if you need help or want to discuss your challenges.
If you haven’t visited Amanda’s blog: Everything Hurts, you definitely should. Her latest post has to do with her confessions dealing with chronic pain. I decided to follow suit using her amazing crafted and perfect icons to lead the way.
I have struggled most of my life with emotional pain, but I didn’t have to deal with constant physical pain until I began showing symptoms of Chiari. I try my absolute best to pretend I’m completely healthy and put together, but I am fighting every day. Today I had severe back pain. I was at work doing my best to make sure it wasn’t noticible that I was in pain. I kept counting down the hours until I got off. Every time I bent down (when working with dogs, that is very often) I felt a jolt down my back. When standing, I felt a constant almost “buzzing” pain that feels like when you sit on your foot too long and it falls asleep, but you continue trying to walk on it mixed with a Charlie horse cramp. I finally closed the playroom down and put all the dogs in their crates for nap time. I looked at the clock, so eager to head out, but I had an hour left. I was assigned to take the grooming dogs out to potty. Every time I made it outside, I leaned against the wall crouched down with deep breathing (like a pregnant lady in labor), while the pups did their business.
I hide my pain. I don’t like telling my parents because I’m afraid they’ll discredit it. They have supported me through everything, but they also think that this surgery is an instant cure all solution and I am afraid to disappoint them.
I’m tired of saying I don’t feel well or my neck is killing me and then having to hear the “maybe it’s the insert some common bug/virus” or “muscle strains suck.”
I’m tired of feeling depressed. I try my best to do the right thing for my mental health, but I get anxious about how others perceive me. Do they think I look fat? Do they think I’m dressed sloppily? Do I look happy? I have a chemical imbalance and no medication I have taken has made things bearable for a continued period. Getting more exercise, eating gluten free, or trying said homeopathic solution isn’t going to work for me (that’s not to say it won’t work for others).
I have a very physical job. I am constantly moving. I feel like it is enough for me, but I want to do more. I want to be that fit BBG girl that looks super cute and they love to work out (or make it look like that) and that it’s super easy. Or that cool yoga chick that has trendy workout gear they actually work out and not just to lounge in.
I’ve had five surgeries since birth, but all my scars are hidden and people can’t see the pain I have had to endure. Every single day is different. Some days I miraculously don’t have any physical pain. Then there are days which I call “spoon days,” like today, where I wake up in pain. My back jolts, my neck aches, my muscles hurt, and no I didn’t exercise the day before. Most days are in between these two. I’m excited to have Mavis trained as a service dog, but am nervous about how people will perceive me. Will they think I am a sham trying to pass off a cute pooch as a service dog just so I can take her into places? (Hello anxiety, dear old demon).
I always have used food as a coping mechanism, which is why I was so overweight (obese, actually) as a child and in my teens. It will most likely always be a love/hate relationship because now I have IBS (although not confirmed and I don’t think it is, I think it’s just MCAD) and MCAD to deal with, which makes foods scary for me. Foods that I have never had a reaction too, suddenly make my mast cells react for no reason. I can eat that same food and have nothing wrong the next time. I have “plumbing” issues and often get sick from eating different foods. Yet, I have my junk food weaknesses, like most people do. (SourPunch Straws and Sonic are my guilty pleasures) Why do I feel Diet Coke is a necessity (I cannot have high sugar amounts because I get deathly ill, no I don’t know why, but 30g of sugar is my limit, so Diet is the only soda I can have, yes I know the “real” soda might as well be better, but soda is bad regardless, and here I go again, thinking too much of what other people think about my habits)?
This post wasn’t an easy one to write, but I’m glad I did. Working towards self love and a happy or manageable lifestyle.
If anybody who reads this has good tips on managing anxiety, let me know. I’m willing to try anything: like blogging for example, getting my thoughts out via the world wide web. Only a handful of people will most likely read this and I’m good with that.