pain.

I have a hard time explaining to people that I will not get better. This is only going to get progressively worse, if anything, and I am in pain everyday. Most of the students I go to school with only worry about making it to Friday, so they can party on the weekend. They complain about having to study, while here I am not sure if I am going to make it through class because the pain is too bad. I write this from my couch, heat pad on high on my back, neck brace on with my Real Time Pain Relief MAXX ointment lathered on my neck and back praying that this pain will pass quickly. I am on methocarbamol, a muscle relaxer, and am trying my best to only take one tramadol a day. I have lidocaine patches that I wear 12 hours on (although they don’t ever stay on that long!), 12 hours off on my lower back. I take tylenol and advil daily in addition to these other medications to try to alleviate anything. The pain is the worse thing having to deal with, but I also have weekly allergic reactions. Last Wednesday I had a horrible reaction that left me wheezing, covered in red splotches, and horrible gastrointestinal discomfort. I try my best to push forward and to see the best, which I have so much to be thankful for, but sometimes it’s hard to stay focused. I also suffer with depression and anxiety. The brain’s way of processing pain is similar to depression, so it definitely can have an impact on my mental health. I have had to take a year off in total from college to deal with this and it’s something I’ll have to fight everyday for the rest of my life. I am so incredibly blessed to have a partner willing to stick it out with me and be not only my best friend and husband, but my caretaker too for days that I can’t get by or nights that I come home with tears.

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I want to create a safe place for people suffering, not only with chronic illnesses, but with mental health as well. We are in this together. Please feel free to comment if you need help or want to discuss your challenges.

Xo,

Cass

Vida

 Rollercoaster. That’s what my life has become. So many ups and downs. I had an amazing trip to Galveston. I stayed with my best friend, Dianne for a glorious week by the beach! The water was amazing and the weather, so pleasant! I took Mavis along with me and she got to enjoy her very first beach list and could not get enough. She officially loves sand: eating it, tossing it, and covering her bitty body with it! She also is a professional seashell collector and bird chaser. Galveston is such a dog friendly area and I was imagining my future along the coast with my curly-tailed babe. I collected so many sea shells and enjoyed hours at a time on the shore.

Along with the much needed and wonderful getaway, I started talking to a certain someone. At first it was friendly hellos and cute little questionnaires. What started as an interesting chat became so much more. I have found my soulmate. I know this seems sudden and completely out of the blue, but I think when you know, you know and well, I know, at least I’m fairly certain. This man treats me so incredibly and accepts me for all that I am. I’m not an easy package and I know this. How do I say, “Hey, I have a chronic illness and bunch of issues, and I’m sorry, but this is who I am”, and expect another to say “okay, I want you regardless.” Not an easy task to take on and it makes opening up hard, but I did and to my surprise, I was accepted. Chivalry is not dead, I know this to be true now. Caleb treats me with the upmost respect and I feel at peace around him. I think we just connected right away and we have so much in common. I think all my praying and hoping has finally paid off. I’m passionate about our relationship. I think it’s easy to say that this is the one for me. C is already my best friend and I’m not one that easily trusts others, but yet, it’s so natural for me to trust him.

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With joy comes pain. My pain has been unbearable lately. The past three days I have basically been bed ridden with severe back pain, debating whether or not to make he emergency room trip. I constantly worry that this is what my life will become: Days at a time suffering. Tomorrow I have a pain clinic appointment to hopefully get this under control. I also got news that I cannot be genetically tested through my health network because they don’t do that type of testing. I basically have to research on my own to get my diagnoses, but I just don’t have the energy or time right now and it’s just a label, isn’t it? If this pain doesn’t subside, I don’t know what I’ll do. I need tomorrow to come so I can see if this pain relief will come.

In other bad news, my finances are quickly diminishing. My parents are divorcing and so their finances are suffering too. I don’t have enough money for classes or even enough to live on hardly. I’m so stressed. I don’t know if I will be able to graduate this May after all, if I don’t have enough money for it. I wish I could change so many things, so many stupid decisions. I have blown through my money. I’m the typical dumb young person. I thought I was ahead by having a savings account, but that can only go so far. I finally was able to make a payment while awaiting my loan to go through, thanks to my dad

One last thing! I’m hosting a fundraiser to help support my living and medical bills. Bravelets are wonderful little bracelets in all different styles that say ‘brave’ to support a cause. They come in a number of different colors, but the featured are some of my favorites: glacier blue, pink, and silver. I hope you love them as much as I do!

Xo,

Cass & Mav

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

Grateful.

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:

  1. 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.
  2. 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.
  3. 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

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.

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.