Hi. I’m Lyn. I’m 54 years old, chronically ill, occasionally hilarious, and permanently uncomfortable in my skin. Literally. That last part is the autoimmune urticaria. Untreatable. My immune system is nothing if not committed. I’ve been living in this body for 54 years. It took 46 of them to get diagnoses that made sense of any of it. My labs used to look fine, by the way.<\/p>\n\n\n\n
It probably started on Easter Sunday when I was nine years old. I was dressed up, standing in church, minding my own business, and my nervous system made an executive decision. I went straight down \u2014 right under the pew.<\/p>\n\n\n\n
The fainting was blamed on low blood sugar \u2014 it was Easter Sunday, after all, and I’d had my share of candy before church. Meanwhile my Pepsi intake was a source of ongoing concern throughout my entire childhood. Two years later when the hives appeared, those were a figment of my imagination. I was a child with an autonomic nervous system already in revolt, autoimmune urticaria nobody believed existed, and a spine quietly deteriorating \u2014 and the medical consensus was essentially: less candy, less soda, and maybe stop making things up.<\/p>\n\n\n\n
For the record: I was right. About all of it.<\/p>\n\n\n\n
I also had Degenerative Disc Disease as a teenager \u2014 just like both my parents. When I told doctors, they told my mother it was in my head.<\/p>\n\n\n\n
That pattern would continue for a very long time.<\/p>\n\n\n\n
After my first back surgery, I noticed a strange feeling \u2014 like a string wrapped around my toe. Post-surgical, everyone said. It’ll resolve.<\/p>\n\n\n\n
It did not resolve.<\/p>\n\n\n\n
Over the following decades that sensation spread. Worsened. Quietly. By February 2020, when I finally had a skin punch biopsy, my toes were nearly completely numb. The results: Small Fiber Neuropathy, extremely severe. A condition that had been destroying my small nerve fibers for approximately 26 years while everyone nodded and said post-surgical.<\/p>\n\n\n\n
I am turning 55 in August. Do the math. My body knew long before medicine was willing to listen.<\/p>\n\n\n\n
My most acute symptoms began in 2019. And I want to be honest about this: I genuinely thought I was having a major mental health crisis. The symptoms were bizarre, overlapping, and didn’t fit any pattern I recognized. I’d never heard of dysautonomia. Neither had most of the doctors I saw.<\/p>\n\n\n\n
What followed was years of fighting. Of being dismissed. Of a gaslighting neurologist who looked at my very real, very measurable neurological symptoms and suggested they were functional \u2014 meaning, essentially, in my head. He tried to hand me a Functional Neurological Disorder diagnosis instead of answers.<\/p>\n\n\n\n
I fired him. I fired multiple GI and neurology doctors before finally getting referred to a neuro-GI specialist who actually looked at the whole picture and diagnosed gastroparesis \u2014 two years ago. My stomach had been failing for years before anyone named it.<\/p>\n\n\n\n
The lesson I learned the hard way, and that I will say plainly here: be your own advocate. Because no one else will do it for you. The system is not designed to connect the dots. You have to connect them yourself, or find the one doctor who will.<\/p>\n\n\n\n
Here is what we know now:<\/p>\n\n\n\n
Dysautonomia \u2014 POTS. Severe Small Fiber Neuropathy affecting my feet, legs, and every system with small nerves: digestive, urinary, reproductive. Gastroparesis \u2014 my stomach quit and has refused to negotiate. My gallbladder, essentially taken out by nerve damage, was removed in April 2020. Chronic kidney disease. Chronic edema. Autoimmune urticaria \u2014 untreatable, constant, itchy beyond description. Degenerative Disc Disease. A sleep disorder that has introduced me to my floor, my dresser, and one memorable wall. Brain fog affecting memory and concentration in ways that still catch me off guard. Two micro hemorrhages in my left cerebellum, monitored, cause unknown, nobody seems overly concerned.<\/p>\n\n\n\n
I call them my dome’s slow leak. We’ve made peace.<\/p>\n\n\n\n
And driving the entire enterprise: a seronegative autoimmune process. Cause unknown. Type unidentified. My immune system is attacking something \u2014 we just don’t know what yet.<\/p>\n\n\n\n
Figures, lol.<\/p>\n\n\n\n
Before all of this I was a senior administrator. Sharp, organized, the person who held complex operations together and was known for it. That version of me didn’t see this coming.<\/p>\n\n\n\n
None of us do.<\/p>\n\n\n\n
Tethered and Free is for people who know what it’s like to cancel plans they were already lying down for. Who have a favorite waiting room. Who have explained their condition so many times they’ve started leaving parts out because it’s exhausting. Who were told as children, as teenagers, as adults, that it was in their head \u2014 and who turned out to be right all along.<\/p>\n\n\n\n
It’s for spoonies, dysautonomia patients, chronic pain survivors who hate being called warriors, invisible illness sufferers who are tired of being invisible, gastroparesis patients who have a complicated relationship with food, SFN patients whose nerves are on fire in ways nobody can see, seronegative autoimmune patients sitting with a stack of normal labs and a body that clearly did not get the memo.<\/p>\n\n\n\n
It’s for the person who in 2019 was googling symptoms at 2am wondering if they were losing their mind.<\/p>\n\n\n\n
You’re not. You never were.<\/p>\n\n\n\n
The humor here is real. So is the grief. So is the rage at a medical system that told too many of us, for too long, that we were imagining it. I’m not going to tell you to think positive. I’m going to sit with you in the waiting room, make you laugh about the intake form, and tell you everything I figured out the hard way.<\/p>\n\n\n\n
Honest writing about what chronic illness actually looks like \u2014 no inspirational spin, no toxic positivity, no ribbon-and-flowers aesthetic. Hard-won knowledge about living with conditions the medical system hands you without instructions. Dark humor, because sometimes it’s the only reasonable response to completely unreasonable circumstances. Specific content about Dysautonomia, POTS, gastroparesis, Small Fiber Neuropathy, seronegative autoimmune disease, chronic kidney disease, autoimmune urticaria, and the particular joy of having all of them simultaneously.<\/p>\n\n\n\n
Tales of woe. And how to survive them anyway.<\/p>\n\n\n\n
“Uncomfortable in my skin. Welcome to my normal.”<\/em><\/p>\n\n\n\n Pull up a chair. Or lie down. No judgment here.<\/p>\n\n\n\n \u2014 Lyn<\/p>\n","protected":false},"excerpt":{"rendered":" Hi. I’m Lyn. I’m 54 years old, chronically ill, occasionally hilarious, and permanently uncomfortable in my skin. Literally. That last part is the autoimmune urticaria. Untreatable. My immune system is nothing if not committed. I’ve been living in this body for 54 years. It took 46 of them to get diagnoses that made sense of…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_kad_post_transparent":"","_kad_post_title":"","_kad_post_layout":"","_kad_post_sidebar_id":"","_kad_post_content_style":"","_kad_post_vertical_padding":"","_kad_post_feature":"","_kad_post_feature_position":"","_kad_post_header":false,"_kad_post_footer":false,"_kad_post_classname":"","footnotes":""},"class_list":["post-7","page","type-page","status-publish","hentry"],"yoast_head":"\n