“Suffering with joy.” I heard this phrase yesterday on the radio and it so clearly summarized what I believe the expectation is for women with chronic illness. Sweep your pain, exhaustion, confusion and well-justified anger under the rug for the comfort of everyone else. It comes as no surprise that society would expect women to consistently display a good-natured disposition; this is a normative gender expectation. However, the pressure to “find joy in the journey” graduates to magnificent proportions for women who have chronic illness. Every day, I am bombarded by Memes, inspirational posts and cliched representations of chronic illness. These are targeted toward women! They have pastel colors, feature adorable animals and are packaged in ways that are supposed to appeal to females. They make me cringe. I feel no guilt about my anger regarding chronic illness. I am entitled to be mad, sad, envious, depressed, cranky and every other emotion that feels authentic. I’ve been through some cataclysmic torture and that deserves recognition. So, I just want to encourage all of the women out there to feel safe in expressing the full spectrum of emotions. This is not negative, this is real life.
On a wintry day in December 2011, I shuffled into the building I’d been frequenting for the past several years for the last time. I turned in my undergraduate honors thesis, was promptly greeted by a cascade of silly string following me down the halls of my now alma mater and into the brisk, silent campus. I outreached my wingspan, all 84 pounds of my dwindling form shuddering in relief, in celebration, in pain. I would later climb a flight of stairs to share this occasion with a man I thought with whom I’d share many more. He’d caress my cheek, snuggle me close and be gone within only months. At the time, the celebration seemed to magnify in his presence, exponentially sparkling by the reflection of his lenses. But truly, deeply, the gratification and honor would only ever bloom inside of me.
In honor of childhood cancer awareness month, I am proud to present to you this #GetThePiccture feature by Kezia, the founder of CareALine Products. Because photos often wield a unique propensity for storytelling that words fail to convey, this feature will primarily unfold visually. I will add that Kezia and her daughter Saoirse were both diagnosed with cancer in 2011. Her daughter’s treatment challenges with chemotherapy spurred the innovation of the unique CareALine products I’ve had the opportunity to share with you all. As I reflect about this dynamic mother-daughter duo, I also take a few minutes to feel the intense emotions about the multitudes of children like Saoirse who have passed away in pursuit of saving their lives. Thank you Kezia for you willingness to share with us your story, your passion and incredible dedication to supporting those of us with central lines.
I’m going to propose a hypothesis that is going to sound a little bit, or a lot a bit wonky. When Joshua, my nutritionist, first described this to me, I had no idea what he was saying. Even now, I must admit, I don’t completely understand it myself, but the more I’ve pondered, researched and discussed this, the more plausible it seems. Autoimmune thyroid Hashimoto’s is not a real thing. Let’s be clear, the TPO antibody that measures autoimmunity from the thyroid is a straightforward test. However, the interpretation of this result may ONLY appear to be caused from autoimmunity. And Alternate theory proposes the thyroid can begin misbehaving in many ways due to an underlying virus that has become lodged within the thyroid. The thyroid has been commonly overlooked as a gland necessitating viral and parasitic cleansing for me. I’ve learned this has been a crucial part of my puzzle left unaddressed in the past. So, instead of trying to alter my thyroid replacement medication and potentially encounter scary side effects (been there, done that) we will be working on healing viral and parasitic infections underlying my stressed thyroid.
I was recently showered with a plethora of fashionable fibers from @sleeksleeves ! Because I no longer have a PICC line and these brand new PICC sleeves are eager to make a public appearance, I’ve decided to host a mini giveaway and share them with all of you! The incredible support I received during my time with a line is something I treasure. I’ll be paying it forward and giving back to you! I have five sleeves in assorted patterns, three of which are XS and two XXS. •
To enter the giveaway, 1. Follow yours truly, 2. Tag three friends AND stay tuned! 48 hours and counting until the FIVE winners are announced! •
Must Live in the United States. Giveaway is not affiliated with Instagram BUT entries must been made on Instagram! Find me @brianabeaver1
Oh, hey, it’s just me with no PICC line! SURPRISE! Freeeee! PICC removed! Happy Saturday night! No infection, just time to move forward! I was actually going to have it removed tomorrow, or rather later this morning, because my team has agreed it was no longer needed. But, when my dressing came up tonight, that was my cue. A long, relaxing bath never sounded so good! Here I come!
The irony is that I hardly even used my line. The bureaucratic shortcomings of infusion companies, TPN pharmacies and what are supposed to be supportive services precluded me from getting the care I needed. I am outraged by the lack of sensitivity, integrity, respect and professionalism of in-home nursing services. In my quest to find appropriate TPN care, I contacted many pharmacies, explaining in detail my needs. They responded empathetically, promising to return my calls. I never heard from them again. The ineptitude of medical care cannot simply be a failing of intellect, it is a failing of morality. Because these and more problems happened repeatedly, it is not an aberration, but rather, a reflection of the devaluation of the lives of individuals with chronic illness. This is not OK. Luckily, I was able to pursue other avenues to improve my absorption so I was not TPN dependent. Many other people don’t have this privilege.
Yes, I have a PICC line and I take homeopathic remedies. Yes, I am grain, gluten, dairy, egg, nut, fish-free I eat organic food and I have used TPN. Yes, I take pharmaceuticals, herbs and swig cucumber juice. I have tried IVIG and Reiki. I have a shaman, a neurologist, an osteopath, immunologist and everything in between. I meditate, subscribe to scientifically proven theories and may or may not have conversed with my guardian angel in the past 24 hours. If I’ve learned anything about the tempestuous path to healing, it is that the only successful approach for me is integrative. In the past, when I have adhered to strictly natural therapies, I’ve nearly killed myself by excluding other opportunities for support. Moreover, I have demonized allopathic opportunities. The process of creating such negative associations with any kind of treatment modality waged some serious psychological warfare that I’ve worked very hard to sort through. I’m now happy to say that I recognize the application of a diverse apothecary of options. I am still very conservative about what I put in, but that mindset of inclusion has a far more healing effect than exclusion ever did.
I owe y’all a post about my update on low-dose naltrexone! Because the neurologist and I talked about this medication today, I wanted to jot down some thoughts while this topic is swirling around my mind. So, I have been on LDN for over a year. When I began, I could not get out of bed from fatigue. Within eight weeks, I saw improvement in energy, decrease in pain and overtime, improvement with my sleep. This medication has the best benefit when you start off at the lowest effective dose. I began at .5 mg and eventually worked up to 1.5 as it became less effective. Because the drug works by increasing your natural endorphin production via mild short-lived narcotic/opioid receptor blockade, you don’t want to take more than than is necessary to create the increased endorphin production. LDN can have an anti-inflammatory effect, which often takes between 3 to 6 months to fully manifest. The neurologist was very happy to hear that I have been doing well on LDN, as it has a positive impact on the immune system overall. He wants to increase my dose to 2 mg in order to lower my thyroid antibodies and treat my Hashimoto’s. We will likely be doing this over the next couple of months as there are more pressing issues that need to be treated first! I hope this information is helpful. LDN has certainly improved the quality of my life!
Best doctor appointment ever! Today shall go down in history as the day that a doctor (neurologist) validated what I have already known to be true and explained by my nutritionist. All within five minutes!
“Your illnesses have nothing to do with your Cerebral Palsy.”
I TOLD YOU SO, every other doctor!
We have a plan!!!!!!!!
I learned so much fascinating information about the brain, immunology and its response to SIBO! Wow! Some interesting facts worth mentioning are that what I thought was MCAD is it actually the activation of NMDA receptors that produces an inflammatory response to sensory input: food, chemicals, environmental triggers, the five senses etc. Because this is like a switch that has been flipped, we will need to flip it back–but WE CAN! Not only should this stop the painful inflammatory responses, twitching, panic and insomnia, it will facilitate the healing process by providing a sense of calm and peace. The cause of this incorrect response stems from… My gut! What an incredible feeling of validation and cohesion with diagnoses and treatment goals. My nutritionist, my neurologist and I are all on the same page!
We in the chronic illness community have all been trained to prepare for doctor appointments like the LSAT. Collect, organize and compile all of you lab results, clinical notes and hope for the best. Well, I’m about to suggest you do the opposite. In my hundreds of first doctor appointment, I have found that by providing them with all of my laboratory history, they tend to follow down diagnostic pathways that have already become dead ends. Instead of piggybacking onto what other doctors have tried, tested for and ultimately mistreated for, I like to provide the most basic tests and wait for them to ask me questions to figure out what could be going on. I have an upcoming appointment with a new neurologist tomorrow that was recommended to me over a year ago by my chiropractic neurologist. In preparation, I recently had labs re-done for my Epstein-Barr, immunoglobulin, CMP, CBC and some other viruses and infections. Nothing fancy! I want to provide an opportunity for a fresh start, a fresh perspective, untainted by previous assumptions. I’ll let you all know how it goes!