Voices Across America

My Patient Story

Mags

State: Wisconsin
Congressional District: WI03

Diseases

Chronic Pain, Endocrine Disease, Immune Disease, Mental Health, Migraine

Issues and Challenges

Mags has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Surprise Billing, Abuse (Mental, Physical, Elder), Caregiving, Financial Assistance, Invisible Illness, Job Insecurity / Loss, Transparency in Health Care, Underserved Community

My Story

My story started when I was roughly 15, in the Spring. A grandmother I was very close to was diagnosed with uterine cancer. She didn't want to be put in a nursing home and refused the western medicine treatments so I was her caregiver for her last 6 months.

During that time, I was starting to have alot of pain in my feet, as well as being tired all the time, and having no appetite; so my aunt recommended I see a doctor. But since my parents didn't want to take me, my aunt took me to a naturopath/acupuncturist instead. He did some tests and concluded I had Lymes Disease. He gave me some fancy water and sent me on my way.

Fast forward a few months, I return to his office and he tells me that I'm cured. Yay! If only that had been true....

In the ensuing months, I lost 30 pounds, couldn't get out of bed in the morning, was having pain EVERYWHERE, and still my parents did nothing...

Three years later, I moved out and went to work as an intern at a summer camp. But after a year there having all the same symptoms I'd been having for years at this point, my right wrist started to swell and was hard to move without shooting pains. By the time I went to a doctor, my wrist was the size of a small softball and mostly immobile. I went to the ER because I didn't have a primary care doctor yet, and they did xrays and cat scans before finally referring me to a rheumatologist. He ran tests and told me I had adult rheumatoid arthritis. Long story short about that, he put me on tons of medications that ALL had terrible side effects and as of right now, I'm still medication-hopping and have found nothing that works (unless I plan on never having kids).

A year went by and I was still feeling lousy: exhausted always, never hungry, gaining weight while remaining active, short term memory problems was a new thing, mood swings, dry skin and brittle nails, etc. During that year, I was trying to follow up on a node that they'd found on my thyroid when I was in the ER the year before. So, I found a primary care doctor; told her I wanted to be tested for Lymes, diabetes, and hypothyroid (all of which run in my family).

I came back negative for all except hypothyroid. So I had a biopsy of the node after him telling me that my chances of thyroid cancer were fairly high because I'm a woman with a thyroid disease. But while he was looking at my ultrasound, he said something under his breath, but I heard it. He ordered some extra labs be done, but he said he could guarantee based on how my thyroid looked that the antibody test would come back positive for Hoshimotos Thyroiditis.

So here I am at 20 years old; recently engaged, starting medical school, and a full time job. And I have 2 autoimmune diseases that western medicine CANNOT manage and close to no guidance besides the internet as to what to do next....

If there's anyone else out there who is at this place, let me know.
Let's walk the journey together.

My Motivation and Inspiration

More people need to share their stories about their "invisible" disease. My whole life I've watched my mom, my grandma, and countless other family members be ABUSED by western medicine. It's time for us to stop just coping with our illnesses and find something that ACTUALLY works. I want to have a family and watch my kids grow up, but modern medicine has told me that I probably won't be able to have kids unless I get my condition under control. BUT THEN DIDN'T TELL ME HOW TO DO THAT. I am upset and the more people that are, the more change we can create.

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