chronic illness – Page 3

Hemangiomas.

December 1, 2015December 1, 2015 CassLeave a comment

I had a MRI on Sunday as ordered by my neurosurgeon, Dr. Parrish and they found two tumors on my thoracic spine (T7 and T9). These are cavernous hemangioma, benign collection of blood vessels, that are pressing against my spinal cord.A cavernoma is a blood filled raspberry. As it bleeds it causes damage to various parts of the nerves. When they bleed they reattach and get bigger. If it is inside the cord it does permanent damage as it damages the spinal cord.

Hemangioma occurs most often in the thoracic spine. These Tumours affect adults and are known to be progressive vascular masses that can cause vertebral collapse and paraparesis (slight paralysis). -back.com

Treatment depends on the severity. I have had extreme lower back pain, numbness, and tingling. With this being said, I do not kno Hemangioma w how to differentiate what is being caused by the chiari malformation and what is being caused by the tumors. They can either try medication, embolization (Stop blood flow), use radiation therapy (which I do not want), or surgically remove the tumors. This is not related to Chiari at all and having them on the spine is extremely rare. I will most likely have to have these removed in addition to my decompression surgery

I need help now more than ever. Please share my gofundme (gofundme.com/cassandrabordner) | if you have the ability to donate it would mean the world to me.

Grateful.

November 18, 2015November 18, 2015 Cass8 Comments

I’ve never experienced so many ups and downs within the span of only a couple of weeks. After my little pity party post, I decided to really try to focus on the positives in life. I joined the movement 99 Days of Freedom, whose mission is to see how Facebook users life are impacted by quitting for 99 days.

In response to Facebook’s controversial mood experiment involving some 700,000 unwitting users, we launched an experiment of our own, determining how life without Facebook impacts user happiness

I surprisingly haven’t missed it yet. The only thing I miss is chatting with my boyfriend via Facebook messenger, but in all honesty we have phones for that and I should be focusing in school anyways. People constantly try to compare themselves to others and I am 100% guilty of this! You can’t compare your life to another person’s because we are all so unique and it is completely absurd to discount your “joys,” to compare them to a celebrity/friend/etc.’s success and oh so happy life. Life is like houses: they may be pretty from the outside with their freshly mowed lawns and little white picket fences, but on the inside the house could be a train wreck and no would ever know unless they entered. I’ve decided to keep track of three different things (or more!) each day that I am grateful for. For example today’s entry:

11.17.2015 – Today I am grateful for:

my boyfriend’s support through my Chiari journey; today my boyfriend drove me to class and waited through it to take me home. He willingly paid for our groceries with no hesitation, although I will pay him half back. He says “I love you” at the most perfect time when my self doubt grows increasingly strong.
my mama; my mother has been nothing but a godsend through this all. I do not have a child so I do not know the true connection a mother feels with her child, but I can tell you that my mom would go to the end of the Earth for me and I her, too. I truly could not have gotten through this all without the love and support of my family, friends, and my amour.
my therapist’s guidance; I’ve always had a tricky time finding the right person to talk to about my hard times, but I finally did back in 2012 with Dr. Hightower. I feel completely at ease to spill my thoughts and finally let out my worries. I try to be strong for everyone around me and for myself, so having moments to release this and get advice on how you can make things better, absolutely is a necessity.

I got the idea to think or write down these grateful moments from time.com and their guide to be happier. I’ve had so many lows in my life, but it does make me appreciate the highs I do get to experience and it makes me really think about consequences before my actions.

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So starting with two weekends ago on November 8th, I traveled to Austin, TX with my mom, dad, and boyfriend for my brother and s-i-l’s baby shower. My second niece is due on January 17th, 2016! Although I am not too entirely close with my brother and his family, it was nice to be able to catch up a little in the hustle and bustle of the hive. My niece, Emelia, is almost three (on January 10th) and is such a sweet, kind and caring little girl with a big heart. I love that child with my whole heart and it makes me so happy to have her in my arms. I can’t wait to be a mother one day, after I can put most of this behind me (surgery, school stressors, family stressors, etc.). I have always been nurturer and my desire to have my own child has always been there. Seeing Zach hold Eme and play with her makes me feel ecstatic; one thing that has helped me through each day is seeing how our relationship has gotten closer. We talk about our future plans all the time and I pray that we will be happy together and make things work through thick and thin. We were put in each other’s paths for a reason and I know being with Zach has changed me fore the better. I’ve grown more confident in myself and with my self image (learning to love my flaws), to let the little things go, and to relax because life happens: there is no sense in getting devastated over an event you cannot change, no matter how hard you try (yet I still do at times and Zach helps me through my dark days). I love our relationship: our netflix marathons, salted baths, call of duty nights, diet coke obsession, neopets, star wars collection, dvd/blu ray hoarding, sci-fi-horror movie nights, road trips with plenty of snacks, walks in the sunset, mini day hikes, fall out 4 game sessions and cuddles. We understand each other’s nerdiness and fully appreciate it.

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This past weekend we traveled all the way to Midland and back to see my grandma, who is nearing her final days. I can’t thank my mom and boyfriend enough for driving me out to the middle-of-nowhere-west-Texas. It means so much to me to be able to see my grandma and be able to express my sincere love and gratitude for this woman that has given so much to my dad, uncle, aunt, and to me. I have never seen such a strong, independent woman. She’s tough as nails, but cancer was the only thing that could stop her. I can’t begin to explain all the sacrifices she has made to give her children a good life and in turn my brother and I through our dad. I was so happy to be around her and see her smile and bring joy to those around her. I am praying I will be able to see her again this upcoming holiday and that she can hold on to meet her great-granddaughter. Despite the circumstances, I enjoyed the trip. On Friday night we ate thai food on all white sheets in the hotel room watching Inside Out (which, if you haven’t seen it, you MUST! I think it is easily one of my very favorites and teaches such an important lesson why we need all of our many emotions to be happy – coincidentally perfect for my life). It was nice seeing my aunt and uncle and being able to be amongst family even though the hard times.

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While spending the evening at my grandmother’s house I watched the horror unravel the Paris attacks on the news. I am utterly speechless at the heinous murders that took the lives of 129 people in a place loved by so many. I cannot understand the capacity of hatred an individual has to have to do something like that, there is no way they are human, just cold terrorist monsters. I began checking instagram to see who was at the Le Bataclan during the mass shooting and bombings and began praying for those people. One picture stood out to me immediately: a young couple that looked to be in their early thirties enjoying the perks of being young and alive- Gilles Leclerc and Marianne Labanane, I later found out to be. The young gentleman with a prominent mustache and his girlfriend thought they would be enjoying an Eagles of Death Metal concert and having a great time. I begin to pray for them, for all the victims and their loved ones. I later found out on Sunday that Gilles had been one of the victims, but his girlfriend Marianne was alive, but in shock. I didn’t know these people at all, but I felt a connection to them; perhaps because I, too, am young and have gone to concerts and can empathize. Something in my heart pulled as I was hoping that these two would be safe and reunited. I’m saddened deeply by the tragedy that took place at Le Bataclan and across Paris that took the lives of so many. I can only hope that it gives the wounded and the victim’s family and friends comfort knowing how much an impact they had on the rest of the world, uniting many nations together.

After the rollercoaster of a Friday, we traveled home for only one night. I sleep best at home, so I was happy to be back in my bed after more than twelve hours of traveling to and back and two nights on a stiff mattress in a motel. One night to take a hot bath and enjoy the comforts of home. The next morning we set out for Houston, where my appointment with the neurosurgeon, a Chiari specialist, resided. On the way down I slept through the entire car ride thanks to my muscle relaxer. That was a special treat for me, as I hadn’t slept well for the past several nights! After meeting my aunt and uncle for some Mexican food and getting lost in downtown Houston, we finally made it to the hotel and settled in for the night. My boyfriend and I went down the the hot tub and enjoyed the immense heat of the spa- we have always wanted one and really love soaking. Afterwards we watched The 100 and the Seattle Seahawks vs. Arizona Cardinals game where we were disappointed by a close loss. That night was miserable. I had a nonstop migraine that consumed every sinus cavity of my head. I woke up around four am, trying to get any type of relief. I started a hot bath and put a cold towel over my eyes like suggested by a chronic migraine sufferer, but to no relief. I could not get back to sleep, so I patiently waited and suffered until seven am to get ready for the day.

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The time had finally come to see the specialist. After we waited for a good bit, I met Dr. Rob Parrish, a retired Army Colonel and Board Certified Neurosurgeon with specialties in Microvascular Decompression for Trigeminal Neuralgia and Hemi-Facial Spasm and, most importantly for me, Chiari Decompression. Within only a few minutes, Dr. Parrish confirmed I had Arnold-Chiari Malformation Type I with a simple temperature sensitivity test to my hands and feet (which were surprisingly worse than I previously had thought) and a few questions about my migraine headaches. He told me I would be a good candidate for surgery and that my symptoms should improve, but he could not give me a definite answer that my pain would subside; one of my biggest problems. I began to cry as I imagined what my life would be like living through pain. My dad reassured me that the surgery would help and that everything would be ok. I set up my decompression surgery for this upcoming December 9th to have a dura patch placed on the back side of my brain from a fascia graft from my leg. I can’t begin to explain the relief to know that a doctor does believe and acknowledges my pain and symptoms. It’s truly a miracle.

I have to be cleared with the cardiologist beforehand to make sure I am in complete sinus rhythm after having to receive a cardioversion last year after going into atrial fibrillation (a.fib). Dr. Parrish is adamant that I see a cardiologist in Houston at the Methodist Hospital he works at. I have been tested before after my first initial attack. I wore a cardio monitor for two months and had no definitive results. I am a bit eager to know what things look like now because I have had episodes of tachycardia probably related to a side condition. The doctor noted that my reflexes were way too entirely active and that I need that looked into as well. A lumbar and thoracic MRI will be done to determine whether I have tethered cord syndrome, another malformation that relates to neurological disorders or some type of spine trauma. Exactly three weeks from now I will be operated on. I am praying for all the success that I can possibly receive from this surgery. A life with no pain.

I know this post is massively long, but I have had so much happen. If I can make it through two more weeks of school work, I’ll be in good shape and ready to go.

Xo,

Cass

Hopeless

November 3, 2015 CassLeave a comment

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

October 29, 2015April 15, 2016 CassLeave a comment

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Chronic Pain Must-Haves by rouxly featuring round candles

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-_169496 1. 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!)

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.

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

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!

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!

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!

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.

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

October 24, 2015November 22, 2015 CassLeave a comment

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