Paresthesia.

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. 

Trying to tackle everything one by one.

Much love,

Cass

Chiari Malformation Month (September)

Hey guys!

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!

XO,

Cass

Yes!

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. 

Xo,

Cass

Follow me on snapchat (@cassandrasheab), Pinterest (@cassrobnson), instagram (@cassrobnson) for more of Caleb’s, Cass’s, and Mavis’s adventures!

Originality

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.

Thanks for staying with us!

xo,

Cass & Mav

Hopeless

I’m really starting to lose hope with how much difficulty I have had to face just to get any relief. Last Sunday my mother, boyfriend, and I traveled to Houston, Texas in hopes of meeting a neurosurgeon who specializes in Chiari Malformation. My dad did a lot of research to find Dr. Parrish and was delighted with his history and his military background. My mother took off Monday from work and my best friend volunteered to look after her dogs, while my boyfriend’s brother looked after our pets. We set off on Sunday afternoon and made our way though the rain to my aunt and uncle’s house.  On Friday I learned that my insurance had not yet approved the visit because of the distance we had to travel. My dad called the office to see what could be done and was told that everything would be just fine because my dad offered to pay for the visit out of his pocket.

This has all been so stressful for everyone. We all ate at a wonderful little Mexican Restaurant called Tony’s and they had excellent enchiladas. It was nice visiting with my Aunt Babette and Uncle Daniel and I know how much my mom loves hanging with her sister, so I was happy she was having such a good time after constantly stressing about my situation.

We made our way to the hotel that smelled oddly of feet, but was close to the hospital. Zach and I enjoyed the hot tub while sharing a white chocolate mocha. For a minute we had relaxation and peace as the heat radiated through our bodies.

After a decent night’s sleep it was time for the appointment. My primary’s office decided to call at 7:30am and wake me up to ask me if “my headaches were better after stopping my birth control.” You see, she seems to think that this all is in my head and my birth control, that I have had no problems whatsoever for the past four years, might be causing me headaches, memory loss, aphasia, and my other Chiari symptoms. Obviously I had no intention following those bogus directions because I’m probably not even taking birth control, might be all in my head, ya know? So I told them no. I was hoping they would tell me my referral went through, but to no luck. I checked on it and they again said it was not authorized yet. We’ve never had trouble with our insurance not covering my many visits (through all my side issues with this malformation), so I was finding it odd that it took over a week to authorize it.

While we were getting ready for the appointment, after no luck of getting back to sleep, I got a call from Texas Tech to set up disability services for me. I was relieved at all the different options that were recommended for me to help me be successful despite my disorder. I can have extra time to finish assignments, tests, and to get to class, which will help so much as there are days I can’t get out of bed  because the pain is too severe to function. I now have a little more hope for my school work. I’m so close to being finished that I do not want to put a halt on it. I should graduate this Summer and since I attend TTU through Waco, they do not offer the classes I need every semester, but only once a year usually, so that would put me back a good deal.

After we were all ready we made our way to the Methodist Hospital for my appointment. We didn’t have any breakfast because my mother was too nervous to eat and we were running late on time anyways. We showed up thirty minutes before my appointment, signed in, and I got a stack of paperwork to fill out. As I went to sit down my dad surprised us hiding in the corner of the office. He originally couldn’t make it because he had orientation for his new job and they got me in for this appointment within week, leaving no notice. He luckily had a very understanding teacher who wanted him to be there with me. I was happy to have my dad there because he is a nurse and knows so much medical terminology and would be far more familiar with the “lingo.”

I began filling out a novel of information packets asking me every bit of information about my medical history, what brought me into the office today and so on. My mother and boyfriend headed back to the hotel to grab my wallet I left in the glovebox because my crappy memory and being rushed made me forget what I needed! I spent about thirty minutes scribbling my life history down when I finally finished the packet and turned it in. We waited and waited and waited. Slowly an hour past until finally I heard my name being called. I was excited to finally be able to see the doctor. We got up and walked up to the door when we were met by a lady who told us that they hadn’t received the referral so Dr. Parrish could not see us. My dad immediately started getting frustrated and told her: ma’am, I talked to someone last Friday, who said it was perfectly fine for us to come if I paid out of pocket.” She began questioning his story: “at our office?” “Dr. Parrish’s office?” We found out that the lady that told my dad that we should come was likely on vacation and nobody else admitted to it. The lady kept saying “you should’ve gotten a name,” as if it would have made any difference. After she went and consulted with the staff three times, the ultimate decision was no. We all became emotional and I stormed out, extremely frustrated. My boyfriend calmed me down as I began to get more upset. I truly believe that these things happen to me more than the common person and that I am stricken with bad luck. There is no other explanation.

My parents came down to the lobby after us. I began feeling hopeless and heartbroken. My dad said that the lady began to get emotional because he explained to her that no one was helping his daughter and that he just wanted to do what was right for me. They both took off work, spent money on gas and a hotel, and were willing to spend a lot on the appointment just so I could see the doctor and get some help. It really is hard not to be pessimistic in these situations. I’m tired of being in pain and having doctors not believe me. I’m tired of being physically exhausted and drained. We got into the car and at a much needed lunch at Smashburger. A black bean burger and a peanut butter chocolate milkshake served as the perfect pick-me-up. As we headed home on the three hour drive, I got some wonderful rest from the help of a muscle relaxer and dreaded my upcoming week.

It’s funny how everything turns out like this.

xo,

Cass.

Whittled Down.

This week has been one of the absolute worst weeks ever. First being told that my condition is “just a congenital birth defect and I do not suspect will warrant any further treatment.” I have been in nonstop neck and back pain continuously. I’ve fallen and skinned my knee because of my balance issues. My memory is worsening causing me arguments with my boyfriend over stuff I’ve forgotten because I’m also very stubborn and used to having a great memory.I found out that my Papa, my mom’s dad, had a really bad infection in his elbow and had to go to the ER multiple times.

Then I was let go at work because if I were to get bitten, scratched, or catch a zoonotic disease it could delay my surgery or worse. I have been forgetting to do certain things and the pain of being on my feet all the time, cleaning, and trying to restrain pets at work was wearing at me. The animals, however, gave me much joy and happiness so I am extremely saddened. Also, I have no source of income at this point. My boyfriend is already on unemployment, so we aren’t in the best position at this point, but he assures me we will be just fine and I shouldn’t worry.

The following day my boyfriend’s car broke down with me in the backseat after we had just bought groceries. I got nauseous and threw up in the parking lot we were stuck in. We had to have it towed and get a shuttle ride because everyone who could’ve given us a ride was out of town. 

That night I had to leave class early because I was in so severe pain that I began to cry. I went straight to my moms house and laid on the ground bawling. I decided then I needed some painkillers and would get an appointment the next day instead of waiting up at the ER. I took my muscle relaxer and old pain killers from my surgery back in 2013 praying for relief.

I then found out that same night some devastating family news that crushed me. I began doubting my self. My thoughts began to stray and I fought hard to stay positive. Insomnia was horrible practically every night.

The next morning I went to school took a muscle relaxer because of the pain and had to call my boyfriend and mom to pick me up and drive my car back home because the meds did not wear off as soon as thought they would. I called my neurologist despite her earlier judgement and left a message telling her I needed pain medicine because of sever neck and back pain. I had a psychology appointment and cried my story to my psychologist who I’ve been seeing for four years and love. She assured me I was going to be ok. My neurologist called me back mid appointment to tell me she doesn’t prescribe pain medication and I have to see my primary. I thought this was a bit ridiculous because this was a side effect of the malformation of my cerebellar tonsils. My psychologist told me she was so proud of me for standing up for myself because she knows how hard it is me to fight back. 

So I called my primary’s office to find she was on vacation but I could see a nurse practitioner instead. I asked if they could prescribe pain meds and was told they can consult with a doctor and could. 

After another restless night I went to my appointment this morning. I was told that I should see a psychiatrist, which I do believe to be true, but is not my primary issue at the moment. She told me to keep taking muscle relaxer. I cried and told her I can’t sleep, I’ve been in constant pain. She said she would consult with a doctor but could give a shot of toradol which helps for 6 to 8 hours. Frustrated I left. I told my dad who took the liberty of calling the office mangers of my neurologist and the nurse practitioner and basically telling them it was unacceptable for me to be in chronic pain and have to wait because my primary is out of town. My neurologist decided not to prescribe after being told she would be reported to the board and my insurance company because she took me on as a patient and didn’t even follow up with me on my MRI findings. So she is no longer my neurologist. I officially fired her. The office manager of the nurse practitioner’s location was much more helpful and got a pain script put in for me right away. 

This whole day I had intended traveling out of town to Livingston to visit with my dad. It has been awhile and I miss him. Last time I went down was before school started. We were hoping to leave right after my appointment thinking we would leave with a pain prescription. 

So around 3 I go to HEB pharmacy: the rx is marked urgent and the technician assures me that it’ll be 30 minutes. So I ask him to call me as soon as it is ready. At this point my boyfriend and I are extremely frustrated. We head to get food and decide to wait to leave until I finish my homework and get a call from HEB. I finish my homework right before 5 and call HEB pharmacy as we drive up to pick up my prescription. At this point I’m in pain. My neck begins aching. I’m told it hasn’t been filled yet I tell the lady I had come by at 3 and told it would be filled in thirty minutes. The lady apologized and told me she would get someone to check me out so I didn’t have to wait in line again. While I’m standing at the side a red headed older lady tells me I have to get back in line which is ridiculous. She says she has been here all day and that she hasn’t had an urgent script (basically calling me a liar), I tell her that it is unbelievable that I had to wait in line when I was told it would be filled at 3:30 and ask to talk to the manager. Of course he’s not in. I’m in horrible pain at this point. I wait in line fuming. Ten minutes later when I get to the front with the cashier, she can’t find the prescription anywhere. She looks in the filing cabinet and multiple trays and consults three different individuals. The crew are all looking over at me because the red head lady is whispering to them and I’m beginning to tear up from stress and pain. The pharmacy technician finally finds it because the girl I was on the phone with put it aside to be checked out early. (So I didn’t have to wait in line) I talk to the pharmacist who was very professional and kind and tells me she is so sorry and that it was completely their faults. She states that next time I should ask to see a pharmacist and not have to wait in line when the medicine was marked urgent and I was in extreme pain. I’m just crying my eyes out and my boyfriend walked me to the car and helped me calm down. Now we are finally on our way to see my dad after a day of hell. We will be arriving almost 12 hours later than we had originally planned to. I have my pain medication that took leaps and bounds to get and I’m exhausted mentally, emotionally, and, of course, physically. I have not strength left to fight against anyone. I pray that God give me the strength to continue on. The things I am thankful for this week: 21 shirts being sold to wonderful individuals. I didn’t think that many people cared about me. I found another lady in central Texas through a mutual friend who is an expert in chiari malformation and is in the hospital fight now for a third brain surgery. She has had so many more complications than I have including hydrocephalus, syringomyelia, and a cyst blocking the flow of her CSF, but I can finally talk to someone who knows first hand what it is like. I can ask her questions about the surgery and it gives me peace and reassurance to talk. My dad’s perseverance to make sure I’m taken care of when I don’t have the strength to do it myself. My mom and my boyfriend taking care of my fragile broken state. My best friend for talking me out of a crappy mood and being there for me. Finally, the end of this week I am thankful for.

End of vent.

 

 
-Cass, chiari fighter, bullying survivor, and surviving life’s tornado.