🦓 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.
One of my 2019 goals is to get back into blogging. I miss my platform of self expression! 2018 went incredibly fast in a slow kind of way. I was pregnant for nearly the ENTIRE year and so many changes happened. We moved, Caleb left the Army and we started our new life in Austin, Texas. As you all know we now have a bundle of joy in our lives. Griffin is now seven months old and I can’t tell you HOW FAST it has gone. He is the absolute joy in my life and has given me new meaning.
I have been asked: how do you do it? How do you care for a baby when you have a chronic illness? My answer is this; Griffin is an extension of myself. Therefore, I take care of him like I would myself, only better. He is the reason I smile when I wake up and yes, he has been the reason I have cried multiple times, but I wouldn’t change it for the world. I have learned so much in becoming a mother. Patience is a major thing I have to learn to gain. Before my son, I hated waiting. But now it’s a lot of my life. I wait for Griff to fall asleep, I wait for him to eat, I fix my entire schedule to wait on whatever it is that he needs.
I can’t tell you how amazing it is to see my baby. He looks so much like me, but has his daddy’s ears and expressions. He is generally a happy, easy-going baby and he LOVES watching the pugs. He has beautiful amber brown eyes and a lot of hair growing in. He has two little teeth that we brush every night and the cutest dimples to illuminate his smile. He has the softest skin and smells of powder and he loves me with his whole little heart. How lucky am I to have this boy in my life?
I am a stay at home mother currently which has its ups and downs. I wanted to be here for Griffin’s many firsts and I don’t really trust anyone else to give him the care and compassion that my husband and I do. I love being with him at every moment, but it also leaves me lacking self care. I rarely get a moment to pamper. I generally go makeup less, hair disheveled, and am in my pajamas nearly all day. I have a repetitive cycle of feeding the baby, cleaning the bottles, cleaning the house, pumping, cleaning the pump parts, feeding the baby, and so on. I don’t get much time to “relax” unless I forfeit my house chores or something on my list.
Being a mother is the best job I have ever had. It’s the most challenging and rewarding job I have ever had the pleasure of having. On bad pain days, I push through because my son is number one over anything. Over pain. Over hunger. His needs come first over any of mine or my husband’s and we are both okay with this because he is one of the best things that have ever happened to us. He is my reason.
To all the mamas out there. YOU are enough. YOU are amazing and you’re doing a great job. Never compare yourself to others because YOU were perfectly made for your baby. There is not a single person who could do a better job than you are doing. (Goes for adoptive moms as well) Your son or daughter was brought into your life because you are the BEST for your baby. Never forget that.
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 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.
I wanted to talk a little about my weight loss journey because I have yet to share my success with you all, given my illness set backs. I have battled with my weight most of my life. I was severely bullied as a child when I moved from Cuba to North Carolina. I had no self confidence and I endured something as a child that I, nor any child or anyone, should ever had to. At that time, I was a bit overweight, but with the cruelty inflicted on me from my classmates, I turned to food to comfort my aching heart. By the time I was sixteen I was about 215 pounds, obese for my 5’2″ petite frame, which caused multiple dislocations of my kneecaps and hips. I have suffered with anxiety and depression from my trauma as a child to the point that suicide seemed like a good option. I was constantly dieting and had poor self image for years and years. I moved to Texas when I was fifteen years old and decided after a year living here, that I would start taking things in to consideration especially since I was so entirely unhappy and basically slept in my spare time.
With the help of my dad I found a weight loss and nutrition camp that I committed to. I lost about thirty pounds in 8 weeks and learned the in and outs about good and bad calories, fats, and what-nots. The next year I gained about ten pounds back, but did relatively well compared to others. I had a little bout of eating disorder tendencies the next year or so, which was hard for me because I was so focused on wanting to be thin. I decided to do a second summer at camp, spending twelve weeks focusing on nutrition, running, working out, and mentoring younger kids with weight issues. I lost forty more pounds that summer with a total weight loss of sixty pounds. Learning this information set me up for future success. I went back to my last year of high school and was even on the cross country team, but I fell back into my ways and my weight rocketed to 230 after my sophomore year of college. I felt like an utter failure after so many people looked at me as a type of success. I hit rock bottom and was ready to give up on life all together after several family issues hit all at once. December 2012, I was done. I sat in the bathtub with a box cutter to my wrist crying because I didn’t have the guts to do it, but wanted to badly to leave the world I was in. I prayed harder than I ever did before that God would guide me. That I would find someone to love me, that I would love myself, and that I could gain my health back. I didn’t have any motivation left, I was ready to just call it and say screw this shitty hand I have been dealt with. I had been on different anti-depressants since the age of sixteen and I was considering electroshock therapy after none of them worked longtime. That May (2013), I had weight loss surgery. It’s something I haven’t opened about at all because I am so shamed from it (having lost weight naturally before and trying to hide my gain back), but it saved my life. With the nutrition I learned previously and this much needed push to get me back on my feet again, I lost 100 pounds to the current weight I am now. I began enjoying life again and exercising often. I pushed myself to be the best I could and until I started getting sick in Fall of 2014, I was doing great.
As most of my followers know, I began having fainting spells and heart issues starting September 2014. I had chronic diarrhea for over a month and my heart had to be defibrillated because I went into atrial fibrillation. I was physically ill for months. I dated a man for almost two years and felt emotionally empty. I started becoming depressed and began having emotional problems again. I didn’t gain weight, but I was, again, in a pit. I often skipped meals or when I did eat, chose the unhealthiest options. The guy I was with did not support my illness, despite putting on a good front. He did not motivate me. Despite not being able to drive and him not having a job, we constantly fought because he didn’t want to be burdened with driving me to class because his video games took priority. His ex used this against me with my once “friend” who told her all of this and therefore was told I’m handicap and can’t do things for myself. My ex never complimented me because “I should know that I’m pretty already.” He scared me after I had a bad reaction with ambien right after my brain surgery where he broke numerous things in our room forcing me to call my mom to save me. He had bad rage issues and I felt I was walking on eggshells every time I was around him. I never felt good enough. I was second choice to his games. I got tired of the pain and I wasn’t strong enough to break away, but luckily I called a break and he ended it because my strength was not there and I would’ve fell back into unhealthy ways. I moved in with my mom when I met the love of my life soon after. Recalling how I felt back in June/July to now, it was the best possible thing that could’ve happened. I think of how much I have been through and what I continue to fight and think that my past thought me what I deserve and how to stand up for myself.
I am currently maintaining my weight for over a year now and am off my antidepressants all together. I am genuinely happy and although sometimes my chronic illness can make me feel like it’s too much sometimes, I think of what I came from and what I have ahead of me. I am now happily at 130 pounds and am making healthy changes to help improve my lifestyle. I am doing a plank challenge currently which is a 28-day tummy toning commitment. I have turned in the diet cokes for diet green tea and am trying to watch what I eat, but still indulging in my Taco Bell/ Taco Casa addiction every once in awhile. Now that I am moving to Ft. Hood with my fiancé, we plan on working out and shaping up for our wedding next year. Caleb pushes me to be the best I can and I know he loves me regardless of what I am or what I become. I’m not used to someone constantly telling me I’m beautiful and that they love me all day. It’s something every woman and man deserves, so if it isn’t in your life now, find it. I usually eat small meals because I get full very easily and I have been a vegetarian for over 11 years. I started eating shell fish about a year ago in attempts to see if a lack of protein caused me to be sick. I only rarely eat crab and shrimp and everything else is meat free. My goals is to get my pain under control so I can start back on my exercise regimen. I love hiking and really want to be able to get back into my hobby. I’m ready to kick it into gear for my wedding! I’d like to tone up and lose at least ten pounds. My fiancé is looking to lose around thirty pounds and is doing a fantastic job. We move in next week and start our next chapter so I will be posting progress and plans!
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!
Well I’ve been a busy busy busy bee! First of all I started back to school and that has occupied all my free time. I’m taking five classes for my last fall semester in college: Organic Chemistry, Exercise Physiology, Biology Seminar, Pathophysiology, and Abnormal Psychology. So far I’m doing relatively well for such a full load, but chemistry will always be my down fall. I have to focus and buckle down to get ahead.
Other news, I got engaged! The man of my dreams got down on one knee on October 7th and I say yes without hesitation. Caleb is my best friend and my soulmate. I knew pretty quickly that he was the one for me. If you haven’t found your significant other yet, let me tell you, love at first sight is possible because it happened for us. I can’t write enough to explain my absolute admiration for this man. His soul, his humor, his smile, his eyes, his everything… I love it. He’s the reason I wake up with a smile and go to bed with sweet dreams. Having a long distance relationship is difficult, but it has been well worth it and I will be moving mid October to join his side.
I’m so entirely excited for our upcoming plans: house decorating, furniture shopping, wedding plans! I’m ready to spend the rest of my life with him! Caleb, Mavis, and Oliver, my little family is perfect! I’ve never been so happy in my life. That explains my absence! My goals are to survive this semester and prep for my last one in the spring, plan an amazing wedding with my fiancé, get in shape with my honey for our big day, get married to Caleb in front of God, my family, and friends, and graduate with my bachelors in Biology and a minor health professions.
As far as my spoonie situation, things have gotten worse. I had a pain management appointment back in late August where I received six large injections in my back with the hopes of relieving my pain. I was numb with a pinching for less than 24 hours. My back has been excruciating. I went to the doctors and almost passed out in the clinic from the severe pain. I received a renewal on my pain medication (luckily, because I was petrified I would not get refill), a muscle relaxer prescription, and a shot of toridol. My mother had to pick me up and I slept as soon as I got home for a solid two or three hours until Mavis demanded my attention. I’m becoming less hopeful about my situation with my back, but hopefully I’ll be receiving better medical care here in the near future. I’m constantly praying that my back will become manageable and that I can live without being dependent on pain meds. Thank you to all that continue to follow my difficult but lovely journey. To all my spoonies, don’t give up. You do have a purpose; if I have one (I want to be a great wife), you surely do too.
Follow me on snapchat (@cassandrasheab), Pinterest (@cassrobnson), instagram (@cassrobnson) for more of Caleb’s, Cass’s, and Mavis’s adventures!
Rollercoaster. That’s what my life has become. So many ups and downs. I had an amazing trip to Galveston. I stayed with my best friend, Dianne for a glorious week by the beach! The water was amazing and the weather, so pleasant! I took Mavis along with me and she got to enjoy her very first beach list and could not get enough. She officially loves sand: eating it, tossing it, and covering her bitty body with it! She also is a professional seashell collector and bird chaser. Galveston is such a dog friendly area and I was imagining my future along the coast with my curly-tailed babe. I collected so many sea shells and enjoyed hours at a time on the shore.
Along with the much needed and wonderful getaway, I started talking to a certain someone. At first it was friendly hellos and cute little questionnaires. What started as an interesting chat became so much more. I have found my soulmate. I know this seems sudden and completely out of the blue, but I think when you know, you know and well, I know, at least I’m fairly certain. This man treats me so incredibly and accepts me for all that I am. I’m not an easy package and I know this. How do I say, “Hey, I have a chronic illness and bunch of issues, and I’m sorry, but this is who I am”, and expect another to say “okay, I want you regardless.” Not an easy task to take on and it makes opening up hard, but I did and to my surprise, I was accepted. Chivalry is not dead, I know this to be true now. Caleb treats me with the upmost respect and I feel at peace around him. I think we just connected right away and we have so much in common. I think all my praying and hoping has finally paid off. I’m passionate about our relationship. I think it’s easy to say that this is the one for me. C is already my best friend and I’m not one that easily trusts others, but yet, it’s so natural for me to trust him.
With joy comes pain. My pain has been unbearable lately. The past three days I have basically been bed ridden with severe back pain, debating whether or not to make he emergency room trip. I constantly worry that this is what my life will become: Days at a time suffering. Tomorrow I have a pain clinic appointment to hopefully get this under control. I also got news that I cannot be genetically tested through my health network because they don’t do that type of testing. I basically have to research on my own to get my diagnoses, but I just don’t have the energy or time right now and it’s just a label, isn’t it? If this pain doesn’t subside, I don’t know what I’ll do. I need tomorrow to come so I can see if this pain relief will come.
In other bad news, my finances are quickly diminishing. My parents are divorcing and so their finances are suffering too. I don’t have enough money for classes or even enough to live on hardly. I’m so stressed. I don’t know if I will be able to graduate this May after all, if I don’t have enough money for it. I wish I could change so many things, so many stupid decisions. I have blown through my money. I’m the typical dumb young person. I thought I was ahead by having a savings account, but that can only go so far. I finally was able to make a payment while awaiting my loan to go through, thanks to my dad
One last thing! I’m hosting a fundraiser to help support my living and medical bills. Bravelets are wonderful little bracelets in all different styles that say ‘brave’ to support a cause. They come in a number of different colors, but the featured are some of my favorites: glacier blue, pink, and silver. I hope you love them as much as I do!