As promised to my instagram followers, here is my What’s In My Bag? Spoonie Edition! As a sufferer of multiple chronic illnesses, it is most important that when I venture from the comfort of my own home that I bring certain essentials to help me survive the cold, harsh world ( a little dramatic, I know). Above are just a few items that are my necessities for a successful outing; one that I can manage pain for the most part and have everything I could possibly need for a spoonie emergency.
My Bag: Mossimo Supply Co. miniature backpack from a while back
What’s In My Bag?
Mylan Lidocaine Patch 5%: I use these pain patches for my lower back, where my nerve pain drives me crazy at times. Although, I don’t use these everyday, when I do they tend to numb the area slightly enough to provide a little relief from relentless nerve pain.
“Mylan Lidocaine Patch 5% is a prescription medicine used to relieve the pain of post-herpetic neuralgia, also referred to as after-shingles pain.”
“Real Time DAILY Relief Lotion offers hydrating moisture for your skin with Homeopathic benefits. Made with 15 of Nature’s Ingredients including Aloe Vera, Arnica, and Nutmeg, Real Time DAILY Relief nourishes the skin while relieving stiffness and pain. It supports the regenerative processes of your body and provides the relief you need on the daily. With a fast absorbing formula, invigorating light-menthol feel, and great smell, Real Time DAILY Relief is perfect for everyday use!”
Pain Management Medications: Dicyclomine used for IBS related symptoms such as severe stomach pain and diarrhea, Tramadol my prescribed pain medication, I’ve been taking since 2015 to help manage my chronic back and neck pain, Methocarbamol – to help with muscle spasms (back), & Zomig, my migraine medicine that I have found myself using weekly.
Advil: I try to limit the NSAIDS I take, but just in case the prescribed combination isn’t doing it
Mylan Epinephrine Auto-Injectors (EpiPen®): I have been administered epinephrine three times (one in hospital, two in clinic) due to anaphylaxis and near-anaphylaxis symptoms, so keeping these bad boys on me at all times can be a lifesaver for my reactions.
Allergy Relief – diphenhydramine (aka Benadryl): I never know when I am going to have a mast cell reaction. Since being diagnosed with MCAD (mast cell activation disorder), I have weekly reactions that results in severe hives, diarrhea and intentional upset, and can sometimes even lead to breathing difficulties.
Go-To Skincare Very Useful Face Cream: I got this product in my Be Kind To One Another Box (BKTOAB) from Cass and I love how light and refreshing the formula is. It makes a perfect base before applying foundation and leaves my skin feeling gorgeous!
“This is face cream that is as much about anti-oxidants as it is moisturisation, because anti-oxidants are just as important. They stop free radicals (found in UV rays, smoking, environmental pollutants, toxins) attacking your skin, which is the main cause of ageing in the shape of wrinkles, loss of skin elasticity and suppleness. And since we get 50-80% of our free radical damage before we turn 21, there’s good reason to be incorporating anti-oxidants into your skin care as early as possible, (and for as long as possible.)”
Wet n Wild CoverAll Créme Foundation: Finding the fight foundation has been a long time problem for women. What’s the right shade? How much coverage do you get? Does the foundation fade? Is it matte or sticky? So many questions and so many foundations tried and this one has been a favorite; It’s cruelty free, light on my face (not super heavy like Kat Von D’s Lock It Foundation), and covers/blends well. With it being super affordable, it’s definitely worth a try!
“Acne scars? Dark spots? Under eye circles? We’ve got you covered! Our cream foundation does it all. This cream makeup blends seamlessly for all-day wear, and its flawless, lightweight formula provides buildable, medium-to-full coverage that evens out skin tone and conceals imperfections. Absorbing powders rid excess oils on the skin’s surface, leaving behind a soft, satin-matte finish. Contains VisiBright™ Technology: a skin-perfecting complex that reduces the appearance of wrinkles and dark spots, while hydrating skin’s natural collagen for a rejuvenating lift.”
Oil & Wind Silicone Beauty Applicator: I previously was using a Beauty blender, but was annoyed at the time it took to clean, the breaking of the sponge, and the amount of product wasted. This Silicone applicator has completely fixed all those problems! It’s extremely easy to use and doesn’t absorb any of the product! This ultimately saves money and is less messy! (Also doesn’t irritate my skin like the BB has in the past)
e.l.f. Bronzer – I’m very much in to bronzy looks, so this palette was a steal at only $4! It has made its way into my everyday makeup look.
“This bronzer creates a healthy looking glow all year round! The sheer soft powders provide the perfect hue of color. Blend all 4 colors together to achieve a blend of perfection or choose your favorite color.”
“Professional makeup artists and beauty mavens will appreciate our Sculpt and Blend 2 – 10 Piece Makeup Brush Set. With face and eye brushes, the versatile collection was designed for use with liquids, creams, and powders. The full range of dual-fiber cosmetics brushes tackles a wide variety of application needs, from applying blush, bronzer, and powder to lining, defining, blending, and smudging to achieve a flawless look. Cruelty Free Synthetic Duo Fiber Brushes”
Natural Mineral Blush by Dusty Girls: in Golden Delicious – This was a BKTOAB item from Australia that I absolutely fell in love with. It has been my favorite all time blush that I have ever tried. The blush is really pigmented and perfect for my olive skin tone!
“Softly contour your cheeks with this versatile shade for a flawless, matte finish. Pressed with a blend of gold and terracotta tones to brighten your smile and enhance your complexion.”
Brow Wiz® by Anastasia Beverly Hills: I have extremely thin brows, so filling them in is something I like to do for a confidence booster. This has been my favorite brow product thus far, although the wand broke over time, but at least the pencil still is perfect. I had to go to the website to learn how to properly apply the Brow Wiz to get the perfect brows.
“An award-winning ultra-slim, retractable pencil that creates precise, hair-like strokes. Use Anastasia Beverly Hills Brow Wiz®‘s fine tip to spot-fill areas where brow hair is sparse, and the custom spooley end to blend for a flawless finish.”
Better than Sex Waterproof Mascara: I discovered this mascara right before my engagement in October of last year and have loved it ever since. This mascara makes my lashes look so amazing and it truly is tear proof!
“Go ahead and cry happy tears, Better Than Sex Mascara is now WATERPROOF! Our iconic hourglass-shaped brush unlocks the volumizing formula that thickens, lengthens and curls for the most extreme, mind-blowing lashes. One coat and lashes are full, defined, and stretched to unbelievable lengths. Two coats and lashes look even more luscious, curled, and dramatic. Three coats and you’ve achieved the most intense, voluminous, waterproof lashes possible!”
“On a walk through the Sicilian countryside we came across a grove of tangerines that inspired us for this mouth watering fragrance. Juicy citrus, fragrant blooms, Mt. Etna in the background and a warm summer breeze all around us. Tangerine, mandarin, peach, bergamot, jasmine, mango, black currant, musk, vanilla.”
Everyone Needs These:
Guess Sunnies: My dad bought me these on sale at the exchange and they’re perfect for protecting my baby blues.
Spare Change: for those 99 cent deals that charging the card is out of line.
Just in Case:
Everyday Good Emoji Bandage: I love these little bandages that Cass sent my in my Be Kind To One Another Box earlier this month. I have adhesive allergies, so these bandages are perfect for sensitive skin and their good for the environment too!
“Just like the Nude range, our Emoji Biodegradable Bandages break down in 2 years and decompose completely in around 4. They’re made using 15% recycled materials and the packaging was carefully sourced to be 100% from recycled material. It’s end to end as sustainable as we could find!”
Fresh Nap Towlette: one word: germs.
Little Buddha: I bought this little guy back in 2012 on Spring Break in New York City (China Town) and since then he’s kind of my lucky little charm that I bring with me when I take my college tests a few years now. He’s even made it through being sucked up in the vacuum, so I’d say he’s pretty lucky.
Diet Coke: Although I am now limiting my addiction, I still indulge in a couple of precious fluid ounces of Diet Coke a day. No, Coke Zero is not the same nor better.
Extra Hair Ties: I never know when my hair will act up becoming unmanageable or I have had several ties actually break while in my hair (thick hair problems)
I hope everyone has a great final week in April! It’s definitely been a rough couple of days this past week, but I am trying to keep pushing forward. I am most eager to graduate on May 19th and to finally be rid of my undergraduate campus! So close, yet so far.
I am going to try my hardest to blog more regularly and especially about my illnesses because my blog was founded on the prediagnosis and diagnosis of my illnesses. I have been having a rough time lately with my pain amount which has lead to something I call painsomnia, or insomnia caused my unrelenting pain while trying to sleep. I have some go to things I use during pain episodes depending on the location of the pain and the severity.
1) The Leacho Snoogle Total Body Pillow – I originally used some of my gofundme money to buy this gem before I had my decompression surgery and it really is wonderful. According to the chart below from sheknows, sleeping on my stomach (which I have done for years) is the worst position for my neck, hip, and low back pain I deal with everyday. Using this pillow not only allows be to get in a comfortable position, but it also keeps me from reverting back to my stomach. The Snoogle can also be formed in different ways for different uses, proving pregnancy is not the only source of intense pain. I definitely recommend purchasing this pillow if you suffer from chronic pain.
2) Heat- my heating pad, in particular, is from the 1960s (or so) and therefore heats up like a little hot plate, which I love! Let’s be honest, the modern heating pads have a temperature maximum that just doesn’t do it for me. I usually use my heating pad at night on my lower back. Heat is a wonderful remedy for muscle aches and pains! Hot baths also are part of my pain regimen with some Epsom salts to soak in!
3) ESA – my emotional support animal helps me with the mental desperation chronic illnesses leave me with. Mavis is usually by my side whenever I’m in pain. Besides providing loving company, my little girl can tell when I’m not feeling well and cuddles up with me to share the burden.
4) Cervical Collar – I use my cervical collar when my neck begins to tire out. Every time I go to the movie theater I use my brace because I begin having pretty significant pain from straining my neck to get a proper view of the screen. My neck has become quite sensitive after my laminectomy and it’s is easily irritated. I am limited on the degree I can turn my head and it often cracks and pops at different times, so stabilizing it can help with pain and support.
5) Medication Regimen – last, but not least my prescriptions and medications aid in managing my pain. On a daily basis I am accustomed to taking tramadol, alieve, Tylenol pm, gabapentin (nerve pain), methocarbinol (muscle relaxer), and lidocaine patches for my neck, back, and nerve pain. I also use a muscle rub and different oils for massages (Bed Bath & Beyond’s Aromatherapy Collection).
If you have any reccomendations on what you use for your pain please let me know.
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.
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.
So a lot, and I mean a lot, has happened over the past two to three weeks. My life has decided to completely fall apart leaving me in many severed pieces. First off, I’m newly single. Almost a two-year relationship over. I’m a little broken inside, but I will move on. I will find the man of my dreams, who will treat me with the respect and love I deserve. So I moved in with my mom. Lots of boxes, lots of arguing, lots of pain (physical and emotional). My life continues to shred: my computer crapped out, I quit my job due to pain and school, and I had a visit with two doctors, who basically are predicting I will be in pain for the rest of my life. Real peachy, right? So I’m a broken pathetic mess. My hair is now blonde and I’d like to go icy blonde. After your heart is torn into pieces, all you can think about is changing your physical appearance and yourself, so that’s what I’m doing. I have more posts planned, but with no computer and my lovely life, things are a bit delayed. All I can say is in the Fall Out’s likeness, please stand by.
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.
This past week has been an especially difficult one. I worked Monday thru Friday, which as a part time employee is a rarity. Getting through the week is an achievement for me with the much needed reward of a weekend of rest (for the most part, minus chores). I talked to my NS and it has been concluded that I need to have genetic testing done to determine if I have any underlying conditions. One suspect in mind is Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.
After talking at length with several members of my Chiari support group, it was suggested that I may be suffering from Ehlers-Danlos Syndrome (EDS) and that my Chiari might actually be a secondary condition caused by the EDS. I have suffered from frequent dislocations and sprains since the age of ten without much of answer as why. I have hypermobility of my joints and my skin has always been very smooth, but I generally develop keloids when healing from surgical incisions.
One condition that EDS can cause is Craniocervical Instability (CCI), or the instability of the craniocervical junction due to the lack of connective tissue support. The condition mainly occurs from repetitive stretch injuries of the neck (which can cause Chiari Malformation, nerve dysfunction, thickened odontoid capsule, retroflexed odontoid, and cranial settling [source]). Unfortunately EDS can only be managed and there are no definite treatments. CCI, however, may be helped drastically with a craniocervical fusion where the skull would be pulled upward into the correct position.
I’m not sure what the future holds for me. I have an appointment with the rheumatologist for additional testing on July 18th and I will be tested for EDS along with other rheumatic diseases to see why I am having this chronic pain. For now, I am back to wearing a soft cervical collar when I am not at work. It’s not the most fashionable of things, but it does provide a bit of relief. If you have to wear a cervical collar, too, you might want to try a collar to snazz your look up.
I haven’t been feeling well. Part of me struggles with trying to pretend things are okay and that I’m fine, but my back and neck pain are now becoming daily reminders again of the war raging inside my body. After my decompression surgery the back pain receded for a while, but it has come back with a vengeance, as I am going on the second week with continuous pain. On top of that, my knee was dislocated this past Saturday at work (two dogs playing rammed into it from the side). The normal individual with no past history of dislocations would have been just fine, but Cassandra. Odd, abnormal Cassandra. Her knee and ligaments remembered the past and dislocated. The knee is fine now. Practically back to normal, as I used to suffer from frequent kneecap and hip dislocations, I “bounce” back quicker, but now my hips are aching, too. I do think that Ehlers-Danlos Syndrome is a likely culprit. I’ve not been diagnosed with it, but I’ve have joint pains, unusual hyper-flexibility, and dislocations for several years. It’s one of those things. I can only be diagnosed with one thing at a time and it’s a long process. Why are diagnoses so important to us, anyways? Maybe it provides us a label for our pain? Perhaps it make our pain “more” real? Will others accept that we actually do have a condition and are in pain because we are now labeled? I don’t know the answer. I think for me, personally, it’s just knowing there is a reason: it’s not just a medical mystery or the unwarranted “it’s-all-in-her-head” look.
I went to see my primary doctor today to report my issues (again). I was prescribed some pain medication and advised to see my neurosurgeon again. I’ve been in bed most of the day with a headache and pains. Praying that tomorrow I’ll wake up refreshed for the day.