My Journey To Filing For Disability, Part 1
At almost 30 years old, in 2016, the word disability wasn’t even in my vernacular. Sure I knew what it was. I knew a few people in my support group who were fighting to get approved for disability. But it wasn’t something I even considered. Until I had to.
In March of 2016 all that changed. While at work, I had my first hemiplegic migraine. It was terrifying. I had a migraine, but that was nothing new. Suddenly out of nowhere, my left side went numb. my speech became slurred while I was at work. I called my mom and all I could say was “Something is wrong, really wrong.” She could barely understand me. Thankfully my coworker told her she was taking me straight to the ER. I was truly thankful that I was already in the hospital and the ER wasn’t far away.
When it all started
Long story short, after testing while in the ER they decided I was having a stroke and started me on mega clot busters. I was admitted to the ICU and treatment continued as though I was having a stroke. They soon realized it wasn’t a stroke or TIA and was likely a hemiplegic migraine. I was told it would likely be a 1-time thing and I didn’t need to be too concerned.
However, it was FAR from a 1-time event. Over the following months, I was in the Emergency Room more times than I could count. Treated like a drug-seeker many times as well, I might add but that is another story for another day. I continued to have migraines EVERY SINGLE DAY, for months. Not all were hemiplegic, but they were all severe. Enough that I was very sensitive to sound and light and vomited multiple times a day. It became hard for me to keep anything down at all. For days at a time.
Living with lupus complicates everything
When you have lupus, it can be triggered by anything. And living with this constant migraine was enough to trigger a nasty lupus flare. While I was in the ICU for the stroke/hemiplegic migraine it was discovered that due to long-term high doses of prednisone to treat my lupus. I developed adrenal insufficiency. Which was causing my blood pressure to stay around the 80s/40s or lower. Which left me feeling completely depleted. Dizzy, fatigued, and mighty mental fog. At that point, I still never thought I was only months from leaving my career and filing for disability. But I was.
Spanning 2016, due to the constant migraines, the lupus flares, and the adrenal insufficiency. I lived in a state of constant pain and vomiting for over 8 months. Because of that, I was calling in way more than I was working, let's just say I wasn’t really popular with my coworkers at the time.
Searching for treatment
In the coming months, I saw more doctors than I can count. We drove all over the state of Missouri to try and find the causes of the headaches. Looking, begging for a treatment that would help even short term. But we desperately wanted to find something that would work long-term. Sadly after seeing all those doctors there was still no cause or working treatment. Each doctor I saw pretty much threw their hands up. I was still missing more work than I was working and quickly running out of sick days.
Finally, my local doctor said we have to get you to Mayo, You can’t continue to exist like this. So in July 2016 my mom and I flew to Minnesota to go to the Mayo Clinic. While there for the week, I saw multiple specialists. They looked at my bones, my stomach, my head, and my heart. The Rheumatologist was so straightforward with me and I greatly appreciated it.
Finally, went to Mayo
The first day there and my first visit with the rheumatologist I was having a bad migraine and vomiting. She couldn’t believe I was up and walking around when she saw that my blood pressure was 70/30. The sad thing was that I didn’t even feel it because that had become my norm. She was shocked and sent me straight to the Emergency Room. They wanted to admit me to try to get my adrenal crisis under control but that just wasn’t an option because we were only there for 5 days and they were packed full of all kinds of appointments.
Throughout the week I saw the neurologist, gastroenterologist, cardiologist, had autonomic testing for POTS, saw the endocrinologist, and finished all the tests. When I went back to see the rheumatologist as my last appointment, kind of the culmination appointment of the week. She was straight to the point. She looked me in the eye and said “Amber if you don’t stop working, you are literally going to drive yourself straight into the ground.”
So that is what I did. When I got home from Mayo in July 2016, I left my job at the hospital I had been at for over 10 years. I applied for short-term disability through my hospital and started the process of applying for Social Security. Over the coming months despite all my issues with severely low blood pressure, constant pain, and symptoms of lupus flares and constant migraines, I was denied disability 3 times. They said they didn't see any reason why I could no longer work.
Stay tuned for part 2...
Have you ever had to change holiday plans because of lupus?