3/10/19
MY HEALTHCARE STORY 2015
I am a 53 year old woman. For the past 16 years I have suffered from a debilitating and rare illness. I do not know how much information you require, so I will simply tell you my health care story.
1999 - After being struck with unexplained, extremely high fever (104), drenching night sweats, severe weight loss and severe anemia. I was immediately treated with blood transfusions for Aextremely low platelet counts. After 3 months of inconclusive lab results, I went to NYC and was diagnosed by Sloan Kettering as having Stage 4B Hodgkins Disease. Although there were some serious doubts about the accuracy of the diagnosis, I had two small children and followed Doctors recommendations. I was put on an intensive chemotherapy regimen for 3 months. Symptoms continued in a more mild form.
2001 - I began to experience a repeat of symptoms. The suspicion was that I had "relapsed". I returned to Sloan Kettering for more invasive diagnostic tests and surgery. This time around, SK was unable to come back with a definitive diagnosis of Hodgkins. I was released with inconclusive diagnosis back into my life. No game plan.
Although symptoms of fever and headache and swelling continued, I managed them with high doses of Advil and continued on. As no one had any answers for me, I managed the condition as best I could. I was determined not to run to the hospital every time I had symptoms, as all I received were invasive tests and no diagnosis or treatment plan.
2003 - I ended my marriage and became the primary caregiver and provider for my children. I went back to work and had a good stretch with occasional bouts and hospital admissions for blood transfusions.
January 2007 - After managing the condition on my own for just over 2 years, I experienced a seriously debilitating episode of what was again thought to be a relapse of Hodgkins. This time I presented with severe, shortness of breath, anemia and a case of Pericarditis (fluid in heart sac) and Plural effusion (fluid in lungs). I was hospitalized for 10 days for surgery to correct these conditions. Once again, they labs could not detect Hodgkins disease and I was released with little information or instructions for care.
The severity of the symptoms made me unable to continue on in my current position as a supervising producer on a successful television show, that was actively in production. I could not continue to go to the office, and passed all of my work over to a new producer. The production company I worked for found me another position with the company, and allowed to work from home to launch a new show, a spin off of the current show taking place in LA. The company was kind enough to offer to keep me at my same salary.
July 2007 -Unfortunately, after 6 months my work was done, and I was given the option to move to LA to continue in the position, or end my employment with the company. In such fragile health, and with my 2 children to consider, I was not able to take advantage of this opportunity and was released. The show went on to enjoy another 4 years of success.
I was left to rely on the savings I had accumulated while working to support my children. Their father was unemployed and under-employed during this time. He was providing no financial support to the children, based on a buy out deal we made regarding our family home. I worked off an estimated value of equity, and received no actual cash support.
August (2007) (?) It took me about 8 months of traveling from specialist to specialist trying to find answers, with weak health and no one able to offer any clue.
I finally came upon a hematologist working with University of Miami, who had heard about what was newly breaking genetic testing. He sent me for a blood test, and it came back positive for a genetic DNA mutation effecting my TNF receptor function. Basically, my body would falsely trigger as needing to go into inflammation mode, hence the fevers, the drain of blood cells, the swelling and fluid collection. In his professional opinion, I didn’t have, and never had Hodgkins disease. The chemo I endured was for naught.
What I have is a very rare genetic disorder, T.R.A.P.S which is now being identified as a Periodic Fever Syndrome. Aside for this doctor, no other Dr.s in SF were familiar with the condition, and none knew how to treat it. Within the last few years, conditions such as this have been placed under an umbrella category known as an Autoinflammatory Disease. They liken it most closely to rheumatoid conditions, but no definitive cures have been identified. Treatment is hit and miss.
November 2007 -
As money was running out, I applied for and was hired to be a Preditor (a Producer/Editor) for a successful Miami production company. The pay matched my previous income. Unfortunately, the office I worked out of stored post production equipment and was kept extremely cold to keep the equipment from over heating. The job required a minimum of a 10 hour day, and was very high pressure. We were expected to work very fast and pump out shows.
After 3 weeks, I was called into the CEO’s office, and he dismissed me due to lack of adequate performance. I was not able to keep up with the demands of the position. I tried to manage my condition, taking breaks during my shifts to go to the beach to warm up in the sun for 10 minute bursts. I had chills, and low energy. It was just not a good fit for them. He was kind, but I was out.
I realized at that time that I would not be able to remain in my current career, due to the circumstances of the work, and the constant unpredictible threat of severe, debilitating symptoms from this rare condition.
Looking for work - What was known by personal experience of triggers were that I needed to avoid spending long periods of time (3+ hours) in cold spaces, such as overly air conditioned office spaces, educational institutions, hospitals, etc.
May 2008 - After draining all of my personal savings in 6 months, and raising two small children as a single mother, I took a job that was offered to me as an administrator at a local preschool. My salary was cut by 2/3. I went from earning close to 6 figures the last year of my employment as a producer, to between 25-30K.
I took the job to do something to stop the free fall. The school was close to my home, I imagined it to be less stressful, and I needed to earn some income. I already had borrowed 15K from a friend to stay afloat. By the grace of God, my now 13 year old daughter had become a recipient of Social Security income due to her father’s early enrollment. That extra $700-$1000 made staying in my family home possible. I also incurred debt.
After 4 years, the deal I had struck with my husband to work off the amount he was due for the value of the home had been fulfilled. He was now required to provide some form of direct child support. The child support ranged from a high of $500 a month for 2 children, to $250.
June 2009 - During the summer of 2009, I was struck with a case of Meningitis. I had a seizure, was somewhat delusional My 14 year old daughter was left to deal with the emergency as screamed that I was dying. I felt myself going under.
EMS arrived, along with my ex-husband and friend and I was rushed to the hospital. I was diagnosed with viral meningitis, given paid meds and sent home.
I was bed ridden for 2 weeks with extreme pain. I could not function at all. Could not read, do any activities because I needed to remain sedated on percocets to manage what was excruciating pain. It was the worst experience of everything I had been through.
August 2009 -
Realizing that the job at the preschool was not a long term solution for adequate earnings, and that the opportunities to earn more were zero to none, I decided to return to Graduate school to pursue a Masters degree in a field I thought would be more conducive to the long term management of my condition.I incurred $40 K in student loan debt to finance this career change.
January 2012 The school had always been closed for the holiday break, unpaid, and for 4 weeks in the summer. I took this opportunity to do freelance work in production, unfortunately once again pulling long hours in a cold environment (Miami Airport). This last effort to work in TV, driven by the ability to make additional income, triggered a severe episode of my condition that left me debilitated with repeated episodes for months to follow.
June 2013 - It took me 4 years to complete the degree going part time. Usually the degree is finished in two, however I had to work to provide some income, and also suffered many attacks during this time. On the day of my Graduation, I was struck with an episode of the condition, high fevers, sweats. I spent the ceremony soaked in sweat, and it wasn’t due to the temperature in the room.
The lack of available opportunities upon receiving my degree has been discouraging. I have tried all I can to gain traction. I am actively pursuing private practice work, but it is no where near adequate to provide for myself and my college age daughter, who lives with me still. I am working as an intern to gain the required 1500 client contact hours for licensure. Unfortunately, most entry level positions require long 50+ hour work weeks, in cold agency or treatment center settings, which I can not do again.
Nov 2013 - My daughters social security benefits ending upon her 18th birthday, which resulted in a loss of $1k a month in supplemental income.
July 2014 - I put my house up for sale in July 2014, no longer able to continue with the costs of keeping it, and it quickly becoming in need of costly repairs. I sold my house, and my daughter and I moved to a 2 bedroom condo in Hollywood beach. My current minimum monthly costs are $3500, which includes rent, utilities, insurances, food, etc.
I can document many periods of missed employment, notes from doctors, employers and colleagues to corroborate the details. I had many occasions of missed work and loss of income over the course of this illness.
7/2015 - The preschool where I had been working was sold. The new Director cut all employees hours and benefits, which at this point were sick days, no health insurance. I had accrued 8 paid sick days over the course of 6 years, which were reduced to 3 upon the switch in ownership to 3. I did not qualify for any vacation time. In my most recent position, as I was an hourly worker, my hours were set by my employer. If I did not work, I did not get paid. Every doctors visit meant missed pay in addition to the cost of the visits. From the time the Director took over, my hours were reduced, then bumped back up, then reduced.
Feb. 2015 - I left my position due to increasingly inhospitable working conditions instituted by the new owner/Director. There was no interest on her part on making any accommodations to my newly appointed immediate work environment. She insisted on keeping the school extremely cold, and would not allow me to close the air condition vents near my desk, of which there were three vents, one blowing directly toward me. I sat with a heater under my desk blowing at all times, something I had done during my entire employment there.
I can have my original employer verify my episodes of missed employment over the years, as well as the working conditions. I also have colleagues who can testify to the extremely cold working environment.
Leaving this position was a matter of survival for me.I determined that I needed to focus as hard as I could to make something happen for myself. I have created a private writing service, a private therapy practice.
I do all I can to earn income. However, I do not think I earned more than 10K last year from these efforts combined.
I would greatly appreciate the opportunity to speak to someone about the possibility of qualifying for SSDI. I have tried so hard to create an income that matches what I had prior to this illness, but I am sinking into the continued decline of poor health and financial ruin. I do not know how I will continue on without some benefits.
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