🦓 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.
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.
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!
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!
Some of my past readers may have noticed that I “revamped” my blog and change a few thing around, but that doesn’t change the fact that this my personal blog and I use it to talk about my struggles with severe depression and anxiety, my Chiari Malformation diagnosis. I think most people are terrified that they are alone and so if this can give my readers a sense of unification or understanding, then my job is done.
So many things have occurred since I last chimed in. First of all, I have a “new” position at the same job as a dog bather. I basically wash and deshed (which is a number of hair removing techniques), brush teeth, clean ears, brush out, remove mats, and give pawdicures to lovely (mostly, although some are plain assholes) little and HUGE doggies. I like this position better because I don’t have to put as much stress on my neck and back as I did as a playroom attendant. I also feel like my job does have purpose. I got to make an adoptee Dalmatian mix all pretty in hopes of getting adopted and a freshly adopted Chow mix a deshed and brush after being severely neglected. My shift hours are also amazing for my chronic pain. I work 10 am – 3:30/4pm, which gives me enough time to sleep in and prepare myself for the shift and also allows me to have time to relax and unwind when I get home. I usually come home and lay on my heat pad for a couple hours. I work Monday-Friday, which is great, as well, because I get the weekend off to spend with my mom, but also having a schedule is good for my depression and anxiety.
I have slacked off a bit in Mav’s training, but we have come LEAPS and BOUNDS since my last post. I had a severe major depression episode and was completely upset after having some really hard personal news hit. I was shaking and wishing that I was not here. I finally let Mavis out and she immediately came over and laid on my upper arm by my face and just stayed still. I didn’t teach this to her at all, but she knew that her mom needed her help. She did so amazing and I felt like all my training had been justified. I also took her with me to a psychologist appointment and she did wonderful! She remembered her blanket commands and sat on her blanket and ignored the door opening! She had little slip ups in the hour long appointment: barking at a plant, falling asleep, and being a little restless. She tooted and snored in the room and my therapist couldn’t help but laugh.
I’ve been trying to cope recently with my chronic pain and anxiety. Today was very difficult in terms of pain. The back of my head had a weird pressure feeling right where my cerebral tonsils are (where my surgical incision is). I also had bad neck and back pain and weird muscle cramping. I thought about asking to go home early, but stuck it out. I got home and used my heat pad for about two hours straight. Tomorrow I am heading to Lubbock for my cousin’s wedding and will be taking my best little pug with me. She won’t be going to the actual wedding because she isn’t that ready to be in public. I get very anxious around event like these. A lot of people make me extremely anxious and then also being judged around family is a worrisome of mine. Hopefully all goes well.
This past week has been an especially difficult one. I worked Monday thru Friday, which as a part time employee is a rarity. Getting through the week is an achievement for me with the much needed reward of a weekend of rest (for the most part, minus chores). I talked to my NS and it has been concluded that I need to have genetic testing done to determine if I have any underlying conditions. One suspect in mind is Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.
After talking at length with several members of my Chiari support group, it was suggested that I may be suffering from Ehlers-Danlos Syndrome (EDS) and that my Chiari might actually be a secondary condition caused by the EDS. I have suffered from frequent dislocations and sprains since the age of ten without much of answer as why. I have hypermobility of my joints and my skin has always been very smooth, but I generally develop keloids when healing from surgical incisions.
One condition that EDS can cause is Craniocervical Instability (CCI), or the instability of the craniocervical junction due to the lack of connective tissue support. The condition mainly occurs from repetitive stretch injuries of the neck (which can cause Chiari Malformation, nerve dysfunction, thickened odontoid capsule, retroflexed odontoid, and cranial settling [source]). Unfortunately EDS can only be managed and there are no definite treatments. CCI, however, may be helped drastically with a craniocervical fusion where the skull would be pulled upward into the correct position.
I’m not sure what the future holds for me. I have an appointment with the rheumatologist for additional testing on July 18th and I will be tested for EDS along with other rheumatic diseases to see why I am having this chronic pain. For now, I am back to wearing a soft cervical collar when I am not at work. It’s not the most fashionable of things, but it does provide a bit of relief. If you have to wear a cervical collar, too, you might want to try a collar to snazz your look up.
I haven’t been feeling well. Part of me struggles with trying to pretend things are okay and that I’m fine, but my back and neck pain are now becoming daily reminders again of the war raging inside my body. After my decompression surgery the back pain receded for a while, but it has come back with a vengeance, as I am going on the second week with continuous pain. On top of that, my knee was dislocated this past Saturday at work (two dogs playing rammed into it from the side). The normal individual with no past history of dislocations would have been just fine, but Cassandra. Odd, abnormal Cassandra. Her knee and ligaments remembered the past and dislocated. The knee is fine now. Practically back to normal, as I used to suffer from frequent kneecap and hip dislocations, I “bounce” back quicker, but now my hips are aching, too. I do think that Ehlers-Danlos Syndrome is a likely culprit. I’ve not been diagnosed with it, but I’ve have joint pains, unusual hyper-flexibility, and dislocations for several years. It’s one of those things. I can only be diagnosed with one thing at a time and it’s a long process. Why are diagnoses so important to us, anyways? Maybe it provides us a label for our pain? Perhaps it make our pain “more” real? Will others accept that we actually do have a condition and are in pain because we are now labeled? I don’t know the answer. I think for me, personally, it’s just knowing there is a reason: it’s not just a medical mystery or the unwarranted “it’s-all-in-her-head” look.
I went to see my primary doctor today to report my issues (again). I was prescribed some pain medication and advised to see my neurosurgeon again. I’ve been in bed most of the day with a headache and pains. Praying that tomorrow I’ll wake up refreshed for the day.