I kept biting my tongue.
Not the metaphorical kind. My actual tongue, over and over, while I was eating, because I couldn't feel it anymore. Before that, it was my lips. I thought I'd eaten something I was allergic to. I kept asking people, "does my top lip look swollen to you?" It didn't look swollen. It just felt that way, and the feeling wouldn't go away. Then it spread to my bottom lip. Then both cheeks. Then my tongue went numb entirely.
I didn't know it yet, but that was chronic inflammatory demyelinating polyneuropathy, or CIDP, introducing itself. And it introduced itself in a way that almost nobody expects, because CIDP doesn't usually start in the face.
{{cidp-symptoms-1}}
The tongue and lips were strange, but brain fog is what actually alarmed me first. I stopped remembering things at work that had never given me trouble before, and started writing reminders for the first time in my life. Then the numbness spread to my hands, my feet, my legs, until my legs felt like cement. When I could hardly get up out of a chair, I knew something was seriously wrong.
I should have gone to a neurologist sooner. But I did what a lot of women do: I decided I'd plow through it and told myself I was probably just tired.
I wasn't. It took three months and a mountain of tests, blood work, an EMG, a bone marrow biopsy, a lumbar puncture, MRIs, CTs, before a doctor finally said, "You have CIDP."
My first reaction wasn't fear. It was relief. "Oh, thank goodness," I said. He looked at me like I'd lost my mind. But at least now I knew I wasn't imagining any of it. I had no idea what CIDP even stood for, let alone that I'd be living with it for the rest of my life.
Twelve years later, the only "typical" thing about a day with CIDP is that no two days are typical.
I wake up and take inventory before anything else. Are my legs working? My hands? Do I have an infusion today, or plans with my husband I might have to cancel again? That guilt shows up every morning, right on schedule.
Making coffee means sitting down to recover from making coffee. A shower, taken sitting down, means recovering from that too. More of my life has happened on the couch than I care to count. I'm usually in bed by 9:30, legs aching from whatever I asked of them that day. I no longer drive. My husband cuts my meat for me. Life looks different now that I have CIDP, and years later, I'm still figuring it out. But despite it all, I am still Crystal. I just may do things a bit differently now.
Advocating for myself took years to learn, and building a care team I trust has been important in that process. I now see a neuromuscular specialist, speak up in every appointment, and seek emergency help when I need it.
Community matters too. Finding the GBS/CIDP Foundation International and support groups helped me realize that I'm not alone in my journey. I found people who understood the tingling and fatigue firsthand. My husband has also been a great support system. It was challenging for some of my friends to adapt to my new normal, but the friends who've stayed with me through it all are closer than ever.
Somewhere in the middle of juggling specialists and years of records scattered across offices, I started using PicnicHealth to manage it all. Having everything in one place has been a relief, and it even reminds me how long it's been since I've seen a particular doctor, which is usually the nudge I need to make the appointment.
{{cidp-symptoms-2}}
I got an email one day about a CIDP research study and said yes. I try to say yes to anything that might move CIDP research forward. I hope studies like this uncover the patterns, and the differences, among people living with CIDP that could eventually point toward better treatments.
If you're on the fence about joining a study: chronic illness has a way of making you feel unproductive. Research gave some of that back to me. There's no pressure, you go at your own pace, and even if you never see the results, you're part of the solution. CIDP takes so much from us. This is one way to take something back.
If you or someone you love has been living with CIDP, your story matters to science.
Join our early breast cancer registry to be counted and share your story with research.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
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Click the Zoom link sent to you by email or text message, or use the link available on your PicnicHealth Research Dashboard.
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