So – I Wrote a Book. What the Actual Fuck?
So – I Wrote a Book. What the Actual Fuck? Read More »
CIDP – In The Beginning
When I was first diagnosed with the rare, incurable disease called CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy), my doctor came into the office after all the standard tests and said, “Well, I think you have CIDP. You better go home and Google that.” Then he abruptly walked out the door. Truth. I was left sitting alone stunned, shaking and most of all terrified. When I finally made it out to my truck and used the Google to look up CIDP, I fell apart. FYI: don’t launch Google after any diagnosis! This is how a doctor is NOT to handle a patient who has just been given what seems like a death sentence except you don’t die. Not really. This post is full of twelve years of CIDP wisdom and meant for anyone, whether you were just diagnosed or you’ve been on your journey for years. Knowledge is power! Before I go any further, let me be clear: I am not a doctor. I am a CIDP patient. Twelve years. I have a severe, advanced case considered Stage 5 by The Mayo Clinic (Jacksonville, FL). I’ve gone from mere tingling in my feet to complete immobility. I use a wheelchair and an ECV scooter wherever I go. I am here to share my experiences in the hopes of enlightening you on your path to creating a better quality of life, even with CIDP. Things to Understand and Ponder If you were just diagnosed, let me say I am so sorry. Also, you are validated. You are seen. You are a Warrior. There is a lot to learn about this disease. Treatment alone can take a while to find the right applications that work for you. Consider what type of doctor diagnosed you. You really should be with a neurologist who specializes in rare diseases. The diagnosis of CIDP can be very tricky. It took an entire year for me to have a solid diagnosis. Standard tests include: nerve conduction, electromyogram (EMG), lumbar puncture, and lots of blood labs. There could also be a muscle & nerve biopsy, genetic tests, and sensory tests, as necessary. FYI: CIDP can be easily confused with many other autoimmune diseases. Be patient if you are still testing after a few weeks or even months. Once you are truly diagnosed with CIDP, please understand that this is a rare, incurable autoimmune disease. Rare means many doctors are not qualified to give long-term care in something they don’t understand; it’s not on their ‘radar’. Incurable means it cannot be cured, and you will live with this disease for the rest of your days, so proper treatment is crucial to maintain the patient’s quality of life. Autoimmune means the disease can flare or ‘attack’ at any given time, automatically. Additionally, it is very common that once you truly have an autoimmune disease that it will trigger other autoimmune diseases. The only way to know is to go down the rabbit hole of tests and labs to disqualify each possible second disease. You should step back a moment and make a list of all concerns you have, then move them around to prioritize what needs to be worked on first. I have kept a notebook on my phone full of every step of my journey since 2015. It has kept things organized and understandable along my rocky road, both to me and my healthcare team. Realize that not everything can be worked on all at once. If you make a list and understand what needs ‘priority help’, you can create a day-by-day schedule and feel in better control. Last, no matter what advice you receive in our gracious CIDP community, mine included, all your concerns need to be shared with your health care professionals first. Our patient community can only offer support. The doctors are the ones who will be taking care of you. Important: If you feel your doctor isn’t listening, you may need to find another medical professional. This is a serious disease that requires your voice as well as the doctor’s. You have begun a long-term relationship and it cannot become one-sided or it will fail as time wears on. Here is a great website for research to understand what CIDP is and what resources are available: GBS/CIDP Foundation International You’re Not Crazy – You’re Recreating I remember in the beginning of my diagnosis when everything in my head began spinning out of control. I couldn’t grasp the disease, how it was disabling me and the independent control I was about to lose. I never went to counseling but let me strongly suggest that if you can’t mentally handle this new life you never asked for, SEEK HELP. So many times, we are deep in the treatment and physical side of trying to move ahead that we forget the mental side of things. Our mental health is just as important, maybe even more. Embrace. Embracing I had an incurable disease was something I had to accept before I could really move ahead with healing mentally. Having an incurable disease is like grieving death. You go through the cycles of grievance except it never truly ends. To accept who you are now and what has happened, you have to embrace everything. The disease, the devastation, the support you need, the new life you have to create …all of it. This does not happen overnight but if you consciously work on embracing the truth, your mentality will prepare you to move ahead with clarity. Purpose. I had the great fortune of doing some patient advocacy work on a podcast and met my very first friend who had CIDP. We were both being interviewed and she brought up that she went through a dark period where she felt useless but couldn’t put her finger on it. In a flash of wisdom, one day she realized
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New Life Series (P1): Sitting with Jesus at the Edge of the World
This article is part 1 of 4 in the ‘New Life’ series. It is based in absolute true life events. Mine. # I knew exactly where I was going. I went there every night. A small forest path that wound slightly left and right, up and down. It was covered in just enough snow to crunch beneath my calf-high leather boots. Over head, the spruce and pines swayed soft in the wind, shuttering a fresh snowfall. As I followed this familiar path, each new tree lit up with white lights, not unlike the mini white Christmas lights we buy at the super stores but these lights had a glow like a thousand fire flies. I was deep, deep in the forest, so clearly their power was not electricity. But it never made a difference how they were made to glow. What was important was I knew they were glowing for me. That seemed so simple. So innocent. As I continued walking through this ancient tunnel of trees, I began to see the expected clearing up ahead. It grew closer and closer. The trees parted abrupt, the fading sun almost blinded me and if I took one more step forward, I would be plunging. I was all, and at once, on the edge of a magnificent cliff, over looking a mountain range so vast and so personal, I can’t find the right words to describe it. The snowfall became more brisk in the open air and an up draft wrapped itself around me, almost taking me forward. But I’ve been here so many nights, I know what happens next. One step forward, one look straight over the rocky overhang, a breath, a wonderment, a step backward then another breath. Taking that extra step forward would have to wait for another night. Behind me and slightly left was a manmade bench of solid pine. Not linear. The seat was overly oblong and curved in several places. It was polished only from generations of sitting. The back of the bench was also oblong with a strange high and low curvature. It had strength and wqs held to the seat with three thick, hand-carved poles. It sounds uncomfortable but I tell you it’s very existence was designed for such peaceful respite as I now sought. I know. I’ve been here so many times before. I turned slightly and made my way to the bench. Without even looking, my left hand shot forward and scooped up a large fur coat, complete with a hood that swallowed my head. Maybe elk, maybe wolf. I never asked so I can’t speculate. I only know when I put it on, something naturally calmed all the voices that were troubling me on my trek through the trees. The cloak began to swallow me in it’s breadth so I wrapped right then left. Satisfied I was bundled up warm, I finally sat on the edge and stared out at the majestic scene before my eyes. Mountains in every direction. Trees scattered up and down them. Below the cliff, a deep valley. Within the valley, a Bavarian village kissed by the falling sun. Snowfall. Every where snowfall. Then pure silence. Even the wind moved in a hushed tone, just out of earshot. I sat, as I always did, struck with amazement that such a place could exist and that I, small and insignificant, was allowed to witness its perfection. I waited and it came. The distinct aroma of honey crisp apples and pure balsam. Not overbearing. Just enough to shift my mind from the silence. My eyes remained forward as he slid up next to my right side in his own fur. He looked out, too, but spoke directly to me. “You’re not wrong,” he said. “I feel wrong,” I said. “I’d tell you if you were wrong.” “Would you? Maybe I’m making up the words in my head that you speak to me.” “That is possible. But I believe you know otherwise.” I took a breath and exhaled, mist coming from my mouth. “I do,” I said. Silence. That was what was most important. The silence. “You hear me calling you every night. That’s why you come,” he said. “I come for many reasons,” I said. “Oh?” “Mostly to silence the confusion.” “We’ve covered that.” Silence. “Tell me the truth.” More silence. Then it fell from my mouth, unrestrained. “I’m here to stop the voices. The painful scenarios I’m bearing all by myself that are destroying me from the inside out. To seek real answers to the questions I’m making up the answers to.” “And?” “To hear you say how much you love me.” Both our fur cloaks swirled and almost became one as he wrapped me tight, laid us both back on the bench and pulled me close. “I love you without question, with reserve, without judgment,” he said. The snow paused but a moment. He continued. “I just love you. And it’s going to be alright.” I finally looked up into his most beautiful, excepting eyes. “Do you promise?” “I do.” It was really that simple. Believe. He kissed me on the forehead several times, murmurs of love escaping his lips. Then silence. Long silence. “Look. The lights are coming on,” he said. We both leaned far enough forward to watch the lights on the houses in the valley light up randomly just as the sun sank behind the gigantic hills. Up and down the majestic mountains, trees in the forest also lit up. It was beyond magic. It was purity. I waited. It would come because this was a space blessed with pure truth. “You’re not wrong,” he said again. And just like that, my tears cascaded in waterfalls down my
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