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.

Chronic Pain Must Haves

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I finally managed to finish my “Chronic Pain Must-Haves” after working on it for a solid week and testing out some of the recommended products. Here we have it; I narrowed down what I personally think is a must when enduring chronic pain. I realize I’m “new” to the area, but with three months of serious pain, I feel like an expert already, although I know others have suffered through several more. I hope that my list helps both those who have just started experiencing chronic pain and those who have had it for years. Without further ado, lets get down to the necessities.

Neff-Daily-Purple-Beanie-_1694961. Daily Sparkle Beanie – Neff – $18 –neffheadwear.com. What’s better than a soft beanie to warm your head on a bad hair day? (Check out the ones from Burton: super soft!)

41Sbma7L6vL._SY355_2. Aromatherapy Body Lotion and Massage Oil – Bath & Body Works – $13 ; $16 – bathandbodyworks.com. I have had terrible insomnia for a couple of months now. I had to try aromatherapy after I heard it works for some: I absolutely adore it. My boyfriend is kind enough to give me nightly massages with this oil and yes, it is quite incredible. The scent Lavender Chamomile is perfect to create a relaxing feeling. Now do they put me right to sleep? Not quite like Ambien, but definitely helps set the tone for the night.

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3. Blue Jean 11oz Muse Facet Jar Candle – Capri Blue – $32 – gypsy05.com or Amazon. I realize this candle is quite expensive in comparison to what most people usually pay for a candle, but I love this scent. My mother got this as a gift and I ended up snagging it and loving the scent. It’s a mix of citrus, white musk, and patchouli and it lasts for a good while!

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4. Awareness Case – Inspired Cases – $15 – inspiredcases.com. If you are suffering from a disorder or illness, inspired cases is sure to have an awareness/support case. I love mine because not only does it support Chiari Malformation awareness, it also fits well and has textured print. A portion of the proceeds goes to a select cause! They have cases for iPhone 4/4s, iPhone 5/52, iPhone 5C, iPhone 6/6s, iPhone 6/6s+, Samsung III, Samsung 4, Samsung 5, iPad mini, iPad air, Note II, Note 3, and Note 4!

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5. Huggie Bear Heating Pad – Bitten – $22 – amazon.com. This awesome little pal not only serves as a lovable friend, but also a heating pad for when you need some heat therapy on sore muscles. Herbal lavender and buckwheat scented and comes in brown or tan. I use a regular heating pad and a fan heating pad for my neck, but I have my eye on this one.

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6. HRH Nail Lacquer – Butter London – $15 – butterlondon.com. Any nail polish will do really, but painting your nails to support your illness is wonderful. I like Butter London, but the price isn’t desirable. I would try Sinful Colors available at Walmart and Walgreens.

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7. Lush goodies – Lush – $14.95 – $259.95 – lushusa.com. I love lush products, especially the adorable wrapped gifts. Although I rarely buy products from Lush, and if I do it’s usually for a special occasion, all of it smells amazing and are to die for.

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8. Dammit Doll – DammitDolls – $15.95 – dammitdolls.com. Now, I haven’t actually gotten my hands on this little guy, I’ve heard they are super awesome when it comes to releasing anger and stress. The dolls patterns are limited edition and they come with a sewed in patch that reads: Whenever things don’t go so well, and you want to hit the wall and yell, here’s a little dammit doll, that you can’t do without. Just grasp it firmly by the legs and find a place to slam it. And as you whack the stuffing out yell “Dammit! Dammit! Dammit!” Perfectly said.

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9. 3-Piece SkinCare Kit – Devonne by Demi – $39.95 + S&H – devonnebydemi.com. I really have enjoyed the Devonne by Demi skin care products. They smell amazing and work well. I don’t however see myself ordering every month, so I went with the 1-time shipment and have to say, I’m a fan. I even got a little candle with my purchase that smells delightful. The Devonne by Demi set is to “bridge the gap between the pimple years and the wrinkle years.” It comes with a deep facial cleanser that is coconut-based, a hydrating radiance mist that is loaded with antioxidants, and a 3-in-1 moisturizing primer that absorbs excess oil and minimizes pore appearance. The whole set is a wonderful skincare routine with great results.

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10. Fight Like A Girl Signature Unisex T-Shirt – Fight Like A Girl Official Gear – $19.99 – fightlikeagirlclub.com. These shirts let you show off your support in several different colors. They even have a tie-dye colored shirt, if you just want a shirt to support every cause! I bought a purple one, a size up for a comfort feeling. They also have other wonderful designs.

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11. Netflix – Netflix – $7.99 – $11.99 a month – netflix.com. Okay I watch a ton of netflix, I’m a certified marathoner. My boyfriend and I don’t even have cable because we really don’t need it with the selection netflix has. There are up and downs to it, but I have been a user for six years now and don’t plan on quitting anytime soon. They have a first month free promotion on now. Choose to watch Grey’s Anatomy, Sons of Anarchy and special netflix series like Orange is the New Black, The Killing, and The United States of Tara. They have three different options basic, standard, and premium.

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12. I am Brave Shield Necklace – Dogeared – $48.00 – dogeared.com. I love Dogeared’s necklaces; they are so dainty and have wonderful messages on it. “Strength is always in style…” This “make a wish” necklace is a reminder that you are strong enough to get through this struggle- God wouldn’t give you anything you couldn’t handle. They also have this style in gold and available on black silk instead of sterling silver or gold chain.

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13. Striped Shopping Cart – Typhoon – $29.99 – $49.99 – containerstore.com. I’ve started having difficulty with my backpack. As much as I adore my Burton pack, it’s too painful and heavy right now for my weak muscles. I recently ordered one of these shopping trolleys to use as a rolling backpack. These shopping carts are quite common in the UK, I can see why! There is an umbrella pocket, two side pockets, and an additional exterior pocket. It holds up to 40 pounds and is removable from the frame. It folds up for compact storage as well. Get it soon because the striped one is on sale currently!

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14. Snoogle Original Total Body Pillow – Leachco – $59.95 – amazon.com. I can’t go on enough about how much I love this pillow. It is like several pillow in one and supports my aching back and neck. The cover is machine washable and replaceable. There are several different ways to use the Snoogle too, making it the perfect all-in-one pillow. This has become my most favorite item by far and has kept me from sleeping on my back and providing the support I need to get some rest!

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15. Black Sheep Sleep Mask – Pompon Designs – $18 – etsy.com. Sleep masks are awesome for spoonies. Although it’s hard to get used to at first, the sleep masks definitely help with keeping out light for daytime naps. This one just happened to be cute!

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16. Mermaids Tee & Legging Pajama Set – ASOS – $43  – asos.com. I was saddened to see that this set is out of stock today. Comfy pajamas are obviously a must and ASOS has some really cute options to choose from. Most of my comfy pjs are from Victoria Secret, so make sure to check out their selection as well. Stay away from satin and fleece as they usually are uncomfortable fabrics that don’t allow for breathing.

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17. Amira Faux Fur Slipper – MUK LUKS – urbanoutfitters.com or amazon. I got a pair of these slippers for my birthday last and year and I practically live in them. They run about fifty, but are worth it because they are so comfortable and keep your toes nice and warm!

That completes my must-haves! In summary these products help me make it through the day. I also wear a hoodie-footie (adult onesie) from pajama grams when I’m not in a blanket mood. Start shopping now! There are some good deals that are in right now and the prices will go back up shortly, don’t miss out!

In other news I have an appointment this upcoming Monday with the specialist neurosurgeon, Dr. Parrish. After a horrible experience last Monday where I was told multiple times that I have a referral to psychiatry put in (completely unrelated to my main visiting reason: filling out SDS paperwork, DMV Disability Paperwork, obtaining an Ambien prescription, and Pain Management- all for Chiari). Although she filled my paperwork out, I could tell she was not on board with the Chiari diagnosis. She said that the symptoms are most likely due to migraines (blue hands? Aphasia? Memory loss? Hand tremors? Loss of balance? Extreme neck and back pain? Insomnia? All from migraines, eh?) and that I should stop my birth control because it could be the cause (over 4 years taking with no problems before).Then she said that I had normal flow of CSF (b/c ventricles) and that I don’t need anymore pain medicine (she seemed to be astonished I got the prescription in the first place). I picked up my MRI report later that day which clearly states that there is visible blockage in the major intracranial vessels with a 6mm herniation of the cerebellar tonsils. But it is all in my head… Technically it is, but that’s beside the point. I decided I will no longer be seeing my primary of six years if she is not willing to believe me and that she can’t even read a MRI report correctly. Anyways, got my paperwork filled out, which was my main intention and I got my sleeping pills because I have not been able to sleep hardly whatsoever. I am anxious to see the Dr. on Monday and get his expertise on my malformation. I’m sure we will schedule a surgery date (planning for right after finals) and get the ball rolling to get me better.

Xo,

Cass

Another Week

Another week down means I’m all that closer to getting relief. This week wasn’t the greatest either, though nothing like last week’s pure agony. I made it through this week of school although I missed two class periods due to my intense pain and unforgiving insomnia. This week I bought a snoogle “pregnancy” pillow in hopes it would relieve some of my pain and help me sleep sounder and to my luck, it does. In fact, I love it. I believe it’s my new favorite. I lay with it in bed, on the couch, and bring it on car rides. It provides the perfect amount of support for my back, neck, and legs. Which is why I decided I would make a post of “Chronic Pain Must Haves.” I’m hoping some of the things I’ve discovered will work for them too. I also received a cervical collar to help with my neck when I’m not laying in my snoogle. It’s perfect and helps relieve the pain of compression on my neck. This was one of my issues why I was having difficulty staying in class. Gravity would get the best of me and I needed to lay my head on the desk. I’m praying this will really benefit me, come Monday.


After finding out a Chiari Specialist that was recommended didn’t take our insurance, I was a little depressed. It’s important to me to find a Chiari Malformation expert due to my associated problems and the lack of knowledge of this defect. However, my dad was able to track down another specialist in Houston (~3 hours away) that has done “hundreds of these procedures.” After calling for some information, we discovered he does take our insurance! I have a doctor appointment on Monday with my primary with hopes to get a referral to him along with a new rx for pain medication and a few disability applications I need done for my school (TTU is working with me to forgive some of my missed deadlines due to my condition- I never missed a deadline before I had this). I’m praying that this neurosurgeon knows his stuff and I’d also like to see a geneticist because there are several side conditions that I speculate I have including EDS, POTS, and MCAS. I’m praying that after the surgery these associated symptoms will be reduced or limited.

One thing I am excited about deciding is getting my hair done before my surgery. I was really worried that the neurosurgeon would butcher my hair as vain as that sounds. I had a pixie cut my junior year of high school and absolutely hated it. I wore hats practically everyday to hide it and cried at my insecurity. So I texted my hair dresser about my concerns and I found some undercut hair cuts that make me feel a lot better about having to have the back of my head shaved.


Today officially marks the end of my BonfireFunds fundraiser! I’m pretty happy about the amount of shirts sold. It means so much that people care enough about me to support my condition. Can’t wait to see all the amazing people wearing their purple. I can’t express how grateful I am for the amount of love I’ve been shown.
Look for my upcoming post!

Much Love,

Cassandra

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.

Insomnia and Pain

Life as of Right Now

I have been having such a hard time with pain, migraines, and insomnia. Every night I either can’t get to sleep or wake up in the middle of the night and can’t get back to sleep. I’ve counted and I take roughly Twenty pills a day. Twenty!! Between my muscle relaxer for my back, my anti-anxieties to sleep, my need for tylenol, and my daily vitamins and meds. I now have an infection of my mastoid, which absolutely is painful. It’s finally stopped throbbing after three days of heat compression and antibiotics. My neck and back aches constantly from the Chiari and I really just want to lie in bed all day. I am struggling to stay positive, but I know that I am a strong individual and that I CAN do this. I miss my not having my dad and mom by my side every step of the way, but I’m growing up and this is one challenge that I’ve been given to tackle. I will continue to fight and stay motivated, it’s the only thing I can do right now.

My referral to the neurosurgeon has been approved and put in and they will be contacting me next week. I can’t wait to finally have a plan for things.

Cassandra’s Chiari

I can’t tell you all enough how much it means to me to have a support system in place. 15 shirts is incredible so far. I’m very appreciative of everyone’s love and willingness to help.

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Above is the link for the Facebook event to buy the shirts; Please invite your friends and family and share.

About Cassandra

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In case I have individuals who don’t know me personally reading my blog, I decided I would introduce myself and talk a bit about my passions. First of all, I’m a full time student at Texas Tech University and majoring in Biology with a minor in Chemistry. Yay science. I used to hate science in high school, but I absolutely love it now that I’m in the real world. My favorite subject is microbiology.

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I also work part-time at a wonderful little vet clinic as a vet assistant. Animals are my absolute favorite. There is nothing more satisfying knowing that I helped an animal and made a difference in their care. I am seriously thinking of becoming a veterinarian for dogs, cats, and small animals. I used to watch Animal Planet 24/7 and Steve Irwin was my idol. They have a permanent place in my heart. I love style, yet I usually dress super casual in a sort of I-don’t-care-what-anyone-thinks way, but there are occasions where I show my sense of fashion. I’m addicted to pinterest! Who isn’t these days? I actually have a board for my chiari malformation. I think it was one of my ways to cope when I found out. Pugs are my favorite animals and when I graduate, I will adopt one! I live with my boyfriend of 14 months and his brother in a cozy duplex with our Pomeranian, Eli, and our Tabby, Oliver. My mother lives right across the street so I get to see my other babies often too: Tasha and Ginger, the sweetest Chihuahuas with loads of personality. I have the most amazing parents and am so lucky to be close to both of them. My dad lives in Livingston on the lake with our Doberman, Max. He’s a nurse and served in the military for twenty+ years. My mother is my best friend and is the sweetest and most bubbly person you will ever meet.

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 I have one brother, Rhett, and sister-in-law, Jackie, the parents to my two little nieces: Emelia is almost three and a new little girl is due in January. I also have another “sister” that I’ve bonded with so closely since we were sixteen. Dianne is my other half and keeps me sane. I am so lucky to have the amazing family I do. I love my Grandparents, Aunts, and Uncles very much and my boyfriend’s family are wonderful too!

My favorite things include: science, horror films, kewpies, netflix binging (right now we’re watching Sons of Anarchy), hedgehogs, crafting (sewing, knitting, crocheting, etc.), Lily Allen music, hiking, Halloween, tattoos, decorating, vans, aliens, unicorns, stop-animation films, pugs, of course, fashion, decor, the paranormal, nature’s beautiful places, action movies, online shopping, and uncrustables.

Things I want to do: be more physically active (get in shape), visit New Zealand and Thailand, start cooking, beat this fight.

Thanks to all!

xo

Diagnosis

I got my MRI results on October 2, 2015 at 3:20 am.

My diagnosis: I have a congenital defect called Chiari Malformation Type I, my cerebral spinal fluid outflow is being blocked by my cerebellar tonsils protruding through my foramen magnum. So in other words , my skull is too small for my brain. (That’s where my smarts come from!) This is a rare disease and effects 1 in 1000. This is what is causing the pain and tingling in my arms and legs. Everything has finally matched up and I am relieved to have an answer finally. So what does this mean?

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I have to undergo decompression surgery to allow the CSF to circulate like it’s suppose to, a type of brain surgery. It luckily isn’t too invasive as they will only have to remove the bone at the back of the skull and spine. The dura overlying the tonsils will be opened and a patch will be sewn to expand the space.The goal is to relieve compression of the brainstem and spinal cord, and to restore the normal flow of cerebrospinal fluid.

The surgery will take 2-3 hours and I will be in the hospital for 2-4 days for recovery.

I do not yet have a scheduled date as I need to meet with my neurologist and my neurosurgeon.

Purple is the color to support Chiari Malformation Awareness, so I’ve changed my profile images to purple to raise awareness about this rare disease.

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If you have the ability please share or purchase one of these shirts I designed to share awareness about Chiari Malformation and to support me in my recovery, it would be much appreciated.

https://www.bonfirefunds.com/cassandras-chiari

Much Love,

Cass

The MRI and Pain

Last Tuesday I had my MRI. I still have no results as of yet. The whole process was completely fine for me because I took two of my anti-anxiety medications which knocked me out for the entire process. There was one period where they woke me up and said I was jerking too much in my sleep and had to reshoot for 10 minutes. They added contrast in, which I vaguely remember. The process took about an hour and thirty minutes. The machine was loud and their is something that goes over my face, which made me even more glad to have taken my anti anxiety meds as I am a bit claustrophobic. I am hoping that I should get the results by today or tomorrow.

Last night during and after my night class I had severe back and neck pain and muscle pain in my thighs and arms. The pain was an 8/10 and brought me to tears. I contemplating going to the emergency room, but I remembered that I had my MRI already and that there is really nothing they can do except give me pain medications and perhaps a spinal tap, if that. I took some pain medication to help ease the pain and laid on the flat ground trying to relax. This morning when I woke up the same pain continued to linger in my lower back. I called to make an appointment with a Physician’s assistant, as that is all my provider had available and am hoping for some pain medication (I finished my very last dose of pain meds from my surgery back in 2013) and hopefully a rush on the MRI results. My lower back is so painful. I am trying to stay still and relax on the couch until my 1 o’clock appointment. I am beginning to wonder if I’ll ever get relief.

Neurologist.

I finally saw the neurologist today. It was a relief to finally be seen by a doctor who specializes in the field of neurology, which I so desperately needed to see. Dr. P was great. I explained all my symptoms to her and she assured me we would get to the bottom of this. She ordered and MRI to be preformed next week on my head, neck, and spine. I also had blood work to make sure that I don’t have any vitamin deficiencies. I am anxious to have this test done as soon as possible because it is so entirely hard to wait for answers. Until then I have three tests and a lot of busy work. Everything is out of my hands so I just must keep going until I know anything.

Rigidity

This morning I woke up feeling physically drained, despite having slept eight hours, and my head feeling as it were in a fog. Both of my feet, legs, and arms ached with stiffness. My feet in particular were numb on the bottom and tingling around the edges. I tried to massage them to relieve the pain as an older arthritic person would. I flexed and relaxed my knees trying to “wake them up.” I attempted to walk across the room to draw a hot tub in hopes of regaining sensation in my feet and stop the tingling, but it felt like I couldn’t move them. I dragged my legs as best I could until I made it to the bathroom. I got a glass of water and food to see if maybe I was just dehydrated or hungry, but to no avail. I sat in the bathtub as my boyfriend began rubbing my neck and back jolting with electric-like pains. As much as I wanted to cry, I had no tears left as I’ve cried myself to sleep practically every night.

Over the past months I have been experiencing an array of symptoms that have left me downright puzzled and hopeless. I know something is wrong; my intuition tells me so. I have an upcoming appointment with a neurologist on the 21st of September, where hopefully I might gain some insight as to what is going on with my health.I have had chronic pain in my back, neck, and legs especially. In addition to the constant pain, I have had issues with my balance and muscle weakness. I fell last night (shocked by the loss of coordination) and have been jolted off balance daily. I know I am clumsy, but not to the point where every time I stand up, the room is spinning and I start to loose my coordination. I only felt improvement when I began to start moving; forcing myself to drag my feet around.

My most noticeable symptoms, to others at least, is my uncontrollable hand tremors. I have tried testing my blood sugar, thinking I just need to eat. I have gone without caffeine wondering if I just was sensitive. I cannot hold my hands still anymore and it’s beyond frustrating, especially when I am majoring in the field of Biology. I have to keep my hands as still as possible to collect samples through pipetters and sterilely transfer them or make a four quadrant bacterial isolation agar. I have had fellow student make comments that I look like I have Parkinson’s and mimic my motions, not intending to be hurtful, but it did as I have the sensitivity of a hormonal teenager going through puberty.

My cognition problem are even more frustrating as I am constantly saying the wrong word for what I’m thinking. This is not just an occasional slip up… I can’t put my thoughts together when answering and speaking, yet I can perfectly comprehend what others are saying and write/type with ease exactly what I am communicating. I have been having migraines and headaches behind my eyes and the back of my head. My words are beginning to slur together at times and I am putting excessive pauses between my phrases. My emotions have been completely out of control as well, worse than usual. I cry at the drop of the pen and am anxious and depressed most days.

I wanted to start blogging in attempts to jot down my worries, Perhaps my mind will become unclouded and I will be able sleep more soundly. Whatever is ahead for me, I want to document it: a record journal in order to process my pain.

I have theories as to what is going on, but I know that it is not good to worry, so I have put my faith in God that whatever happens, happens and it is out of my control