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

WIMB?

image1

I was so excited to receive my box on Monday night full of wonderful spoon approved goods! As promised I made this cute little display to show off what’s in my Be Kind To One Another Box from Cass! This box of gifts made its way all the way from Australia and includes:

I have tried a few products already including the mineral blush, Brazilian Beauty body lotion, Argan Oil, lip balm, and Face Cream and all of it is so wonderful. I felt like I million bucks last night pampering in my goodies. I can’t wait to try out the rest and I am so grateful for being nominated and chosen for one of these amazing boxes.

I have a picture in the side bar that links right to Cass’s Youcaring page for donations if you are interested.

xo,

Cass

Decompressed.

Three and a half days in the hospital, five IV pokes, and an arterial line: I had brain surgery and survived. We headed to Houston on Tuesday, December 8th to give us plenty of time to plan for the bumpy road ahead, staying the night with my Aunt Babette and my Uncle Daniel in Katy, about a 45 minute trip down the road. The day before surgery I could hardly eat. I was so nervous and had absolutely no appetite. I got a call around four pm and was told to be at the hospital bright and early at six in the morning. I knew this would be a hard time for all of us because it meant us leaving around 4 am the morning of and hardly no sleep the night before. I took an ambien the night before in order to drift off to sleep and before I knew it, it was 3:30 am, meaning I had to get up and shower with surgical scrub again and wake my mother up. Once we finally made it to the hospital, the staff made no hesitation in getting me changed into their specialized “Bair Paws” gowns that allows hot or cold air to flow through the gown to keep the patient at a desired temperature. Once I was all dressed and had socks on, the nurse asked if I had used the surgical scrub everywhere. I told her I had not, that I only used it on the back of my head and left thigh. Embarrassment pursued as they made me throw away my gown, change my linen, and rewash with their specialized hot rags. Eventually I got settled down into my new gown and was categorized as a fall risk, so I got new socks and a fancy yellow wrist band. The nurse went over all my information several times to make sure they got every single thing wrong with me: my cell mast activation disorder, tegaderm allergy, my four previous surgeries, etc. etc. etc. I had my IV put in and met with the anesthesiologist. She told me she would monitor me under anesthesia and make sure that all my vitals were fine. She informed me that another IV would be put in while I was under and that I would be given something to relax before they wheeled me back. Amazingly, I was not nervous. I was ready. I met with Doctor Parrish and the operating room nurse before they wheeled me off. I said goodbye to my mom, dad, Aunt Cindy, and boyfriend after they gave me the drugs and took me to the operating room. I arrived to the sacred cold sterile room and the anesthesiologist told me she was going to put me to sleep now. I told her “okay,” and on we proceeded.
I woke up four hours later in the Post Anesthesia Care Unit (PACU) with a smile on my face. I asked nurse Julia, who was awesome at what she does, if I was alive. She laughed and told me that was the first time she had ever heard that one. I couldn’t believe that I made it through and I was awake and feeling relatively great. My mom and my boyfriend were the first to see me with a smile on my face (top left circle) and I told them I loved them and that I was completely alright. Nurse Julia was wonderful and got me about nine different cups of water (thank goodness I had a catheter in) and ice chips as they had no beds in the intensive care unit opened. My dad and Aunt Cindy snuck back in the PACU to see me. My dad previously worked in PACU and as an OR nurse for many, many years, so it felt quite natural to invade any hospital’s “PERSONNEL ONLY” signs and see me, since the lady letting visitors in rudely told my mom that my dad and aunt could not see me. Nurse Julia was able to give me a lot of pain medicines because I began feeling it badly. The shearing pain of my incision in my neck. The cut-muscles, burning. The sting. My leg where my dura patch was taken from began hurting and I was wailing in pain, but content because she was so nice and helping me with my requests. I kept thanking her and telling her she was so nice and that I would leave feedback for her. I got her whole name because I wanted to tell the head people that she was so wonderful. It means so much when people are nice to you, especially when recovering from neurosurgery. I was in the PACU for several hours until a bed opened in ICU and off I went.

My first night there was rough, I started feeling the affects and my tears got the best of me. My throat was on fire and I was told I couldn’t drink any more water (after drinking about 15 cups) because it could mess up my sodium levels (my dad told me this was BS. He said I was young person, not some seventy-year-old). I was not allowed to have as many meds as I did in PACU because apparently that is the “trial” period where they determine which drugs work best for you. The night I arrived I had a young nurse named Brittany helping me and she was teaching a student. I had no idea what the student’s name was, all I knew is she was not well informed about any medications I was on and believe me, trying to explain to the nurse-in-training that you need your prescribed muscle relaxer, but she has no inclination to look in the record at what you’re taking or what you needed, is beyond frustrating. I told her I needed my muscle relaxer about ten times and she began shooting off anti-anxiety meds: klonipin? xanax? NO, I NEED MY MUSCLE RELAXER MY SURGON ORDERED, NOT AN ANTI-ANXIETY. A blank look. Ok, let me check. She said dilauded about fifty times in confusion as to what muscle relaxer I needed, again WRONG medication CLASS. She asked do you know what you took? I said “Don’t you have that in the chart?” I mean I hate to be rude, but really. I am in ICU, INTENSIVE CARE, and you are not knowledgeable enough to check the chart and see what my Doctor had prescribed or what pain medicines I received before in PACU that worked. I JUST HAD BRAIN SURGERY. I began crying and paging the front to please send in Brittany. I explained to Brittany what I needed and she took care of it right away. I was given morphine (which I had a mild reaction to top bottom right photo of burning and inflammation [they dosed me with benadryl and boom out like a light], but who cares, it was well worth it and I hid it from the neuroward staff every time, in fear they would say I couldn’t have anymore) and I fell asleep and was woken up around 2am for a CT scan. I was in and out the whole night so I don’t even recall waking up from the CT scan. I recall them taking me back to my room and telling me my scan looked good and that I just had air built up behind my incision. I drifted off to sleep and awoke to a new nurse, Kevin. Kevin was so awesome. I told him about the difficulties I had the night before and he got the nursing manager to take down my comments and concerns. Kevin took out my arterial line, catheter, extra I.V., and got me walking with the help of a wonderful physical therapist. He even hooked me up with delicious hot chocolate and told me I am one of the few patients who admit the like the hot cocoa. I loved it and drank probably four cups in the morning’s span!

After I was up and walking, they determined I was functioning properly and I was moved to the neuroward on the same floor, but down the hall. I spent two more nights in the regular hospital recovering. I could not get my pain management under control for quite awhile and was nauseated the first two days, vomiting my meals up, soon after consumption. My boyfriend stayed with me in the hospital every night, insuring I had the proper treatment throughout the night and to provide company, of course. He laid in the bed with me as we watched movies together, a.k.a he watched and I fell asleep about ten-twenty minutes later. My baby helped me through so much. Anytime I needed to go to the bathroom he was there helping me to the toilet. My mother also helped me enormously in the hospital and took me for outings to the lobby to see the Christmas tree and lights and the gift shop. I would either fall asleep or get nauseated and we would return about ten minutes later to my room. She ensured I had a meal three times a day, despite my lack of interest, and called the nurse when I needed pain medicine. She showered me and walked me around with my walker several times. My dad and Aunt Cindy only were there the first day in ICU and said goodbye once I made it to the main ward. I was happy that they both came out to make sure I was well taken care of and made it through my surgery. My dad later returned to drive me from the hospital.

After I left the hospital we stayed at a hotel for one day to make sure that I was  out of trouble. I had continued problems: several fits of vomiting and a hard time with pain management. I later found out that this surgery (brain surgery) is one of the most painful recoveries out of almost all surgeries. My mom brought me Starbucks Frappucinos, the un-caffeinated Vanilla Bean, to keep me happy and we even had Chinese food delivered to our room! My mom was so thoughtful to provide all these arrangements for my boyfriend and I.

I now have been home since last Sunday, almost a week, and my mother has taken care of me. Through my tears and pain she has been by my side. I gave my boyfriend some “time off” to catch up on sleep, but he visits me daily. I slept over at my house one night and my “ambien hallucinations” were too much for him to handle so I decided to stay with my mother until Monday. I am getting stronger a bit more each day and going longer without my pain medication and muscle relaxers, but it has been extremely hard. I luckily have not had an infection or any severe problems yet. I have noticed a few sensations that worried me, but I’m giving it time until I see Dr. Parrish in January. I had half of my staples removed yesterday thanks to my boyfriend (one had to be removed on Wednesday because it was literally pinching me and burning). I will have the rest removed (again by my boyfriend who learned via youtube and thanks to Dr. Parrish’s (have to go on vacation) staple remover kit) on this upcoming Wednesday, which will mark a full two weeks! The pain is still there, though, and I can’t believe it’s been less than two weeks. I have been using ice packs and heat pads on my neck and leg and have been relying heavily on my mother to help me. I am, however, feeling better. My pain in my back is finally relieved, my hands and feet have feeling to them, and my spirits are uplifted. I hope to be closer to God and that I can heal through this, work out my other disorders and be tested, and that I can become healthier and happier.

With much love,

Cass

This slideshow requires JavaScript.