🦓 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.
How in the world am I already half way through my pregnancy?! It’s been an overwhelming, but incredible ride so far.
On May 22, we had our anatomy scan which identifies the gender of the baby and ensures baby is on track with growth. Since I have solely committed to not finding out the gender of our little jalapeño, we both agreed to turn our heads away while the technician confirmed the baby’s gender, although there was a struggle for me to keep my hand over Caleb’s eyes as he desperately tried to move it out of the way! No way! There is no way one of us could know and not tell the other, so too bad for you hubby. Our baby is looking healthy as can be and we are growing more and more excited for our little one’s arrival.
Wow. What a little miracle we have here. I am truly in awe at how baby is growing and developing. I felt Baby Robinson move for the first time on the 24th of May. Caleb and I were traveling back and forth from our storage unit (lots of lifting in this heat has made me almost reach my end!) and I felt a little roll from the inside! I exclaimed to Caleb I felt it!! I felt the baby! I called my mom immediately with excitement. It’s such an unbelievable feeling: like a little massage roller from the inside out and Baby R made her/his presence known. Now baby moves daily and sometimes she/he won’t stop! I can no longer comfortably lay on my belly, which is a bummer for me because that was my go to sleeping position prior to baby, but it’s all going to be worth it in the end.
Health wise, I am hanging in there. My biggest issue was dealing with hip and back pain. When I was working my hips would dislocate and hurt often, but now that I am resting, I am feeling better.
What’s getting me through this horrendous summer of being pregnant? The indoors are a must. I cannot go outside for long. I am dying to go swimming and cool off in the water. I wish we had a community pool here, but we sadly do not so it’s either to my dad’s house to go to the lake or they have a crappy lake here, but we have no boat to access it. There is a “beachfront” access (if you can call it that), but the water is so dingy and unsanitary. Lots of cool drinks: water, sparkling juices, and an occasional diet coke help keep my hydrated. I am constantly drinking throughout the day to make sure we keep healthy! Apple slices, grapes, kiwis, strawberries, and blueberries are the perfect summer treats to cool off too. To keep my busy on the inside, I am watching Hart of Dixie, knitting, and playing Neopets (yes, once again.)
On to the fall please! 139 days left until we meet our little one.
We are registered at BabyList and Amazon although we don’t officially have a shower planned yet.
Here I am, once again running behind on blog posts and updating on my oh so glamorous life. I turned the big 25 on February 26th. I always have low-key birthdays, so I spent the day relaxing at home and my husband and I went out to Olive Garden for dinner. My husband did gift me a pair of vegan Birkenstocks and I got some Juicy Beauty products (thanks to my mama) that I had been dying to try out, but in more important news, we’ve been keeping a bit of a secret. This may or may not have contributed to my lack of posting…
We are expecting! Our very first baby is due on October 22, 2018!
Continue reading if you want to know the story of how we found out, my symptoms and cravings, how the ultrasounds went and how having Chiari while pregnant is going.
This past May I walked across the stage at Texas Tech University and accepted my diploma after five years of intense work, tears, and way too much stress. My undergraduate started in Fall 2010 when I took a few dual-credit classes to prep me for the years ahead. I entered McLennan Community College (MCC) as a full time student in Fall of 2011 after earning my high school diploma (with honors). I continued to live at home and work part time as a waitress and a babysitter. I was inducted to Phi Theta Kappa after my first semester for my grade point average and hard work.
In Fall of 2012, I moved to Austin to attend The University of Texas at Austin. I was accepted into the school of nursing, but switched (due to the anxiety of the competiveness of the program) to a nutrition major. I worked part time as a nanny and completed a few classes, but I grew too depressed to continue on. This was one of the worst times dealing with my depression. I became suicidal and questioned my life therefore, I returned home after the semester and took the following spring semester off to deal with my mental health. I began seeing a psychologist every week and focused on my health and diet (as I put back all the weight I lost and more due to the extreme mental agony).
Summer 2013, I returned to classes online and went back full time to MCC. I lost the weight I had gained previously to get in the best shape of my life. I got my first long-time job as a Client Service Coordinator at Banfield Pet Hospital and my GPA went back up! In May 2014 I earned two associates with honors (AA & AS).
After attending full time in the summer to get all my prerequisites finished up, I transferred to Texas Tech University as a Biology major and a Chemistry minor. I enjoyed my first year full of exciting science classes and excelled academically, but I began having health issues. I had unexplained faintness, rapid heartbeat, and chronic gastrointestinal problems. In September 2014, my heart went into atrial fibrillation and it had to be cardioverted back into rhythm after IV drugs did not work. I also began having intese allergic reactions and anaphylaxis which lead to my diagnosis of Mast Cell Activation Disorder.
Despite suffering from these issues, I was on a great path until summer of 2015. I quit my job because I was discriminated against for having depression and anxiety that did NOT interfere with my job. I was targeted by the head veterinarian (who was pretentious) along with another girl I worked alongside (she was the only black employee and she also was having a tough time). We were both basically treated unfairly and made to quit. I was told if I didn’t quit, I would be placed on leave without pay. We were thinking about getting lawyers involved for discrimination, but as anxiety goes, we both dropped it. This is when I began getting increasingly ill and I didn’t know what was wrong with me. I started having brain fog and trouble with words and times (which is maybe why they thought my depression interfered with the job, only it wasn’t my depression at all).
That summer I attended classes full time and worked part time as a veterinarian assistant, but this is when I started having extreme problems (hence the archives start here!). Some of the symptoms I began experiencing was muscle weakness, slurred speech, confusion and brain fog, daily headaches, migraines, loss of balance and coordination, and horrible neck and back pain. The pain was so intense I would lay on the floor crying. I started seeing multiple doctors (even at the emergency clinic). I was told that it must just be a muscle sprain over and over again. As my symptoms progressed, I was let go from my job for fear that I may get hurt. I got several images taken: X-ray, CT scan, and MRI. I was told everything was normal. Luckily I had my dad on my side and we would not give up until I had an answer. I got my hands on the actual MRI report which stated: patient has a herniation of the cerebellar tonsils; something my doctor did not think was important to mention to me. I made an appointment to talk to her and she said that shouldn’t affect me at all because “my flow was good.”
Arnold-Chiari Malformation: “structural defects in the cerebellum. That’s the part of the brain that controls balance.”
She insisted that I just needed a psych referral and basically disregarded my physical concerns, needless to say I fired her. I fought hard for a consult with a “Chiari Expert.” My dad actually found a doctor in Houston that specialized in neurology and did posterior fossa decompressions as part of treating Chiari symptoms. I made an appointment with him and had severe issues having my insurance cover it. My dad offered to pay out of pocket for one appointment; we arrived, cash in hand, only to be told that was incorrect and they didn’t take payment from the patient (only insurance companies). My dad begged for them to see me, seeing how badly my symptoms were progressing, but we were turned away. He didn’t stop until he talked to the insurance representatives and they agreed to cover an appointment.
I finally met Dr. Parish in November and he immediately diagnosed me with Chiari Malformation. My hands and feet were numb due to the lack of proper flow of the spinal fluid cord and he assured me that he could successfully complete the operation with a good chance of aiding or resolving some symptoms. On December 9th, 2015, I under went brain surgery to correct my defect. I had a leg graft taken to be placed in the back of my skull to allow more room for the cerebellar spinal fluid (CSF) to flow. This was an extremely hard time for me as I finished my semester only days before having to be operated on. That semester was truly a grueling one; I had to battle ongoing symptoms of the defect while having to focus on school. The brain fog was immense and it was hard for me to concentrate and memorize. This was the start of working harder than everyone to maintain my grades. In addition to all of this, my grandmother passed away in November only a couple weeks before my operation, but I made it through.
I tried to use my winter break to recover. I signed up for Spring classes foolishly. I was so eager to stay on the path to graduation which was planned for December 2016. After making it all the way through April, it became too much for me to deal with. I wasn’t used to studying after the operation, which is thought to be a Traumatic Brain Injury because of the invasiveness and the aftermath. I couldn’t cope with my confusion. Although my numbness and slurred speech improved, I had much difficult thinking of the right words, staying on a schedule, and had a horrible memory. The pain, which I thought had been resolved (probably masked by the incision pain?), reappeared in March. I made the choice to medically withdraw. My anxiety was incredibly high because I had never had such problems with school as I did that semester.
That summer I had so many life changes. My previous relationship ended and I met Caleb. I questioned my ability to go through another year of school, but I pushed forward. I ran into financial issues as I had to find out the hard way that financial aid is hard. I returned to school in August 2016, determined that it would be my last fall semester. I changed my minor from chemistry to health professions because I would have had to stay an extra semester for one class and I had had enough! I somehow made it through a grueling semester in which I moved and made some serious changes.
January 2017 I started my last semester at Texas Tech, extremely terrified at the course load. I’ll admit that I’m terrible at chemistry and had to buckle down to pass. I somehow managed to make it through despite facing some discrimination along the way (short story: my chemistry teacher blew up on me for forgetting how to set up and apparatus). The months were the slowest of my life. They dragged on and on and I counted the days I had left. I finished my last final on May 12th; that feeling of waking up the day after and coming to the realization I don’t have to endure this repetitive cycle of driving 72 miles back and forth to school and constantly stressing over attendance (that’s what chronic illness does) and proficiency (grades!) is over… it’s liberating, the best feeling in the world! I can’t believe I did it. Over 5 years of hard work with so many challenges and setbacks. I’ve done it! I drove to Lubbock alongside my mom, Caleb, and Dianne to accept my Bachelor’s of Science on May 19th!
So what now? Where will my life take me? I’ve spent this past month applying for jobs left and right, in hope that the perfect one will arise and be interested in my education and experience. I’ve been looking at administration jobs because I know with my chronic pain and conditions, a standing job isn’t ideal. I’ve been working hard this month: exercising, eating healthy, and attending appointments (neurology, allergy, and my PCM to manage my care). I ended up in the ER late May after some terrifying symptoms (numb and blue limbs, confusion/brain fog [worse than usual], feeling faint, & low blood pressure) occurred. It was concluded that I had complex migraine (how can this turn your limbs blue with the blood pooling?) and I got a referral for neurology to see why I am having chronic migraines and neurological issues. The ER doctor said that he saw an old lesion on my cerebellum, which makes me wonder if it is a result of the decompression or something completely different. I fainted a couple weeks later and experienced rapid heart beat upon standing, so a referral to cardiology was put in as well. Praying that I can get these symptoms under control!
Managing my health and upcoming career is stressful to think about, not to mention my endless wedding planning for our upcoming October “I dos.” I often think about my future life and what it will turn out to be. I’ve always wanted to be a mother, but I never thought chronic illness would affect me so much. I just need a steady career and some more answers and/or treatments to manage my defect and diseases. Right now I’m battling my thyroid disease as my medication needs to be adjusted (my synthyroid dose is too low). I just found this out on Friday after my biopsy consult. My doctor that had ordered this test had my results and said nothing (why you have to investigate yourself!). No wonder I’ve been feeling so sluggish, run down, and hungry. Despite working out and eating healthy, I’m not losing any weight! So many times I haven’t been informed of my test results, which is why now I will request a copy!
Here’s to my crazy life ahead (post-undergraduate)! Let’s see where life leads me! Congratulations to the Class of 2017!
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 was so excited to receive my box on Monday night full of wonderful spoon approved goods! As promised I made this cute little display to show off what’s in my Be Kind To One Another Box from Cass! This box of gifts made its way all the way from Australia and includes:
I have tried a few products already including the mineral blush, Brazilian Beauty body lotion, Argan Oil, lip balm, and Face Cream and all of it is so wonderful. I felt like I million bucks last night pampering in my goodies. I can’t wait to try out the rest and I am so grateful for being nominated and chosen for one of these amazing boxes.
I have a picture in the side bar that links right to Cass’s Youcaring page for donations if you are interested.
I am going to try my hardest to blog more regularly and especially about my illnesses because my blog was founded on the prediagnosis and diagnosis of my illnesses. I have been having a rough time lately with my pain amount which has lead to something I call painsomnia, or insomnia caused my unrelenting pain while trying to sleep. I have some go to things I use during pain episodes depending on the location of the pain and the severity.
1) The Leacho Snoogle Total Body Pillow – I originally used some of my gofundme money to buy this gem before I had my decompression surgery and it really is wonderful. According to the chart below from sheknows, sleeping on my stomach (which I have done for years) is the worst position for my neck, hip, and low back pain I deal with everyday. Using this pillow not only allows be to get in a comfortable position, but it also keeps me from reverting back to my stomach. The Snoogle can also be formed in different ways for different uses, proving pregnancy is not the only source of intense pain. I definitely recommend purchasing this pillow if you suffer from chronic pain.
2) Heat- my heating pad, in particular, is from the 1960s (or so) and therefore heats up like a little hot plate, which I love! Let’s be honest, the modern heating pads have a temperature maximum that just doesn’t do it for me. I usually use my heating pad at night on my lower back. Heat is a wonderful remedy for muscle aches and pains! Hot baths also are part of my pain regimen with some Epsom salts to soak in!
3) ESA – my emotional support animal helps me with the mental desperation chronic illnesses leave me with. Mavis is usually by my side whenever I’m in pain. Besides providing loving company, my little girl can tell when I’m not feeling well and cuddles up with me to share the burden.
4) Cervical Collar – I use my cervical collar when my neck begins to tire out. Every time I go to the movie theater I use my brace because I begin having pretty significant pain from straining my neck to get a proper view of the screen. My neck has become quite sensitive after my laminectomy and it’s is easily irritated. I am limited on the degree I can turn my head and it often cracks and pops at different times, so stabilizing it can help with pain and support.
5) Medication Regimen – last, but not least my prescriptions and medications aid in managing my pain. On a daily basis I am accustomed to taking tramadol, alieve, Tylenol pm, gabapentin (nerve pain), methocarbinol (muscle relaxer), and lidocaine patches for my neck, back, and nerve pain. I also use a muscle rub and different oils for massages (Bed Bath & Beyond’s Aromatherapy Collection).
If you have any reccomendations on what you use for your pain please let me know.
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.
So this is delayed because I had a difficult time working iMovie, youtube, and all the ins and outs of the technological platform, but I finally finished my Chiari Malformation Awareness video for September (Chiari Malformation Awareness Month)! In this video I discuss how I came about my diagnosis and the challenges I continue to face living with this invisible illness. If you have any questions, please do NOT hesitate to ask!