Basic Stuff
- Name: Corey
- Country: United States
- State: Wisconsin
- City: West Bend
- Gender: Male
- Age: 40
- Education: Four Year Degree
- Primary Illness: Postural orthostatic tachycardia syndrome (POTS)
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Fibromyalgia (FM)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Small intestinal bowel overgrowth
- Migraine
- Mast Cell Activation Syndrome (MCAS)
- Autoimmune Autonomic Neuropathy, Autoimmune Small Fiber Neuropathy, Chronically Elevated Tryptase
- Year Illness Began: 2010
Functioning Interrupted
Work Interrupted
- Former Occupation: Electrical Engineer - Wireless Design
- Job Responsibilities at Former Occupation:
Design wireless circuitry, troubleshoot existing client designs, create and test compliance testing hardware, validate transmitter and receiver performance. Test prototype hardware for proper operation, range, antenna tuning. Electromagnetic Compliance testing to meet government standards using anechoic chambers and antenna pattern modeling. Specialization in Wi-Fi and Bluetooth.
- Years of Work Lost: 13
- Current Work Status: On disability
Income Interrupted
- Yearly Income Before Becoming Ill:
$60,000
- Yearly Income From Disability:
$15,000
-
Minimum Current Annual Income Loss:
$66,847
- Total Projected Economic Losses For Years Not Worked:
$893,187
Other Interruptions
- My parents or other family members have provided financial support
- This illness has severely impacted my ability to financially prepare for retirement
- I left my job or retired early
- I decided not to have children (or have more children)
Most Impactful Loss
I have lost the ability to do many things that I love, or doing them is very stressful and causes repercussions to my health. This impairs activities on subsequent days. I also exist in a constant state of pain and fatigue. Normalcy of life itself is lost.
My Story
I came down with the Swine Flu and never recovered. It set off an inflammatory cascade in my body which has existed to the present day, causing Dysautonomia (rapid heart rate, adrenaline dumps, brain fog, neuropathy, chronic pain, migraines, dysfunctional gastric motility and digestion, excessive sweating, fatigue, and post-exertional malaise, to name just some of my symptoms. I went from an Electrical Engineer (Top of the class in the quarter I graduated) at the beginning of a promising career, to being severely disabled almost overnight. Chronic daily migraines forced me to take a leave of absence from which I never returned. Prior to the infection, I would repair vehicles, built a huge patio, worked my job, and worked on setting up and moving into a new house. Afterward, basic chores like yard work, house work, cooking, cleaning, etc. became incredibly difficult. One could compare doing them to running a marathon for a chronic illness patient like myself. I also collected other diagnoses of ME/CFS, Fibromyalgia, Small Fiber Neuropathy, Mast Cell Activation Syndrome with chronically elevated Tryptase (negative for Hereditary Alpha Tryptasemia).
Since that time I have made a huge number of accomplishments, both for advocacy, and to improve my quality of life. This is a momentous uphill battle, and while I am considerably better off, I am still disabled and continue to advocate for more research and better scientifically indicated medical care.
I became a founding member of Racing Hearts Day in 2017 - an organization which raises awareness and funding for Dysautonomia research. We started a local patient support group that continues to this day in Southeast Wisconsin. I followed cutting edge research, and helped advocate for testing for myself and other patients for autoantibodies. This advocacy resulted in myself and other patients being given IVIg (Intravenous Immunoglobulin) which makes a significant improvement in quality of life and reduction of disability.
In 2019, I decided to raise awareness further by being featured in two news articles, one of which went viral and hit the USA Today front page as well as being featured on Apple News Top Stories:
https://www.usatoday.com/story/news/health/2019/11/19/dysautonomia-leaves-millions-undiagnosed-barely-functioning/4237075002/
https://folks.pillpack.com/chronic-illness-shouldnt-mean-chronic-poverty/
In addition to this, I have been engaged in a Battle Royale against the Social Security Administration. I initially applied back around 2012 - my application was denied without any notice being sent to me. I reapplied, and was denied all the way up the chain of command, which culminated in me filing a lawsuit against the Commissioner of Social Security. Over 40 pages of briefing finally was vindicated when the US Attorneys stated they agreed with most of what I had written, and the Administrative Law Judge's decision was patently wrong and indefensible. A second hearing after Voluntary Remand resulted in an award of benefits, but with mistakes about the onset date and with an inappropriate review period, and the ALJ playing doctor. My appeal resulted in a third hearing, where the same ALJ wrote a decision that went about face on his original due to retaliation. The Appeals Council now has 75 pages of briefing before them to end this embarrassing failure in their duty and Kafkaesque nightmare of legal filings. Suit will be filed in Federal Court again where I will likely receive an award that overrules the Commissioner's decision. As a Pro Se Plaintiff (self-represented, non lawyer) this shows how embarrassingly poor. SSA is at following its own internal procedures and laws. A small segment of cases goes to Federal Court, and maybe 1% of them or less get an award in court due to the inability of SSA to get it right.
As a result of all I learned from this process, in Spring of 2023 I helped representing a friend from my support group at her own disability hearing. The ALJ issued a fully favorable award to her date of application.
On top the SSA nonsense, I was placed on Medicare as an SSDI recipient. SSI recipients get Medicaid, which makes a lot more sense. I became a dual eligible (Medicare / Medicaid) and that is another nightmare. My IVIg treatment was interrupted in 2022 for two months, and I fully relapsed to my prior state. It took me a year, once treatment was restarted, to get anywhere back to where I had been after 3 years of successful treatment. I lost home care, despite being homebound due to Medicare’s Demonstration Program being discriminatory against individuals with rare illnesses. After a number of months, in December 2022 I found a home care agency to use my Part D coverage. This was terminated in June 2023 when authorization time came up. I was told I needed to regain Part D coverage to get home care since I don’t have immunodeficiency. Those patients are less disabled than I am, so this law is likely unconstitutional. At present, I have returned to the clinic for the last 5 months. Due to the ridiculous way that Medicare and admitting privileges work, I was threatened with another lapse and had to make two visits to the Emergency Department, where IVIg isn't even normally administered.
I presently have a brief of 55 pages before the ALJ, along with 15 supplemental pages after the Part D plan doctor falsified my records and made untrue statements about my treatment history. Given HHS/CMS policy I will likely have to sue my second federal agency in court. I recently started a trial of Xolair using free samples, and now have an appeal pending for it as well.
Patients need to show support for the PROTECT Rare Act. It would allow the use of journal evidence instead of dated and discriminatory compendia.
https://www.change.org/p/pass-the-protect-rare-act-of-2023
