What decades of caregiving have taught me
Lisa
State: Florida
Congressional District: FL06
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Diseases
Blood Disease, Bone / Muscle Disease, Cancer, Chronic Pain, Endocrine Disease, Eye Disease, Migraine, Neurological Disease, Rare Disease
Issues and Challenges
Lisa has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Geography
My Story
A few months after my wedding in 1987, my husband was injured and required 7 surgeries. At 22, I became his caregiver and was thrust into healthcare not by choice, but by forced education. My life revolved around surgeries, Home Health, doctors appointments, prescriptions, medical bills & collection agencies. I worked my full-time job, plus a 2nd job after my husband was unable to return to work.
This exhausting caregiver role has continued for more than 34 years.
In 1997 I cared for my mother through her Leukemia battle, my step-father before his kidney transplant and my aunt who had a double mastectomy.
When my husband developed another bone infection, I was certified by home health to give IV medications and to pack his leg wound.
In September 2003, I had a thyroidectomy after I was diagnosed with Graves Disease, thyroid cancer and large goiter. By 2004, my body pain was so severe I could no longer work.
I was diagnosed with a Stroke that occurred during my thyroid cancer flare along with a heart attack. This led to findings of Central Pain post-stroke syndrome causing intractable pain.
In 2005 I was forced to retire from a 20 year legal career. With no salary, I was unable to pay our mortgage and we lost our home. It took another 5 years to find a medication regime that was tolerable, yet my pain was still severe and constant.
In 2010, I was diagnosed with another rare condition called Stiff Person Syndrome. About the same time, I was so elated to finally meet some other CPS patients in a yahoo group. We all realized that patients needed better education, information, research, and support. Together we started the Central Pain Syndrome Foundation. Three years after serving on the board as VP, I made a linear move with another patient and advocate Becky Brandt,
to co-found Central Pain Nerve Center to help others dealing with Intractable Pain from CPS and other rare conditions. Together, we’re “Helping patients thrive, not merely survive”, until there is a cure.
Through 30+ years dealing with healthcare , I’ve encountered many access and affordability issues stemming from a complex and over regulated industry.
Access
The doctors and diagnostic facilities eographically closest to the patient are not necessarily the best.
I’ve visited and interviewed over a dozen physicians only to find most neither cared or did not have the knowledge to help me with my certain conditions.
Affordability
Being forced to retire disabled and losing my salary rendered me unable to pay the $1,900 monthly healthcare option that I had while working.
When applying for SSIncome & Medicare, I had a mandatory (24 month) 2 year wait for Medicare coverage. During this wait, it’s nearly impossible to find physicians who would accept cash or give a discount for paying cash. All tests, visits, prescriptions and treatments are forced onto a credit card that adds up quickly to thousands of dollars. All leading to bankruptcy and/or extreme debt, living a few dollars above poverty.
My Motivation and Inspiration
My motivation comes from the decades of experiences while dealing with the healthcare industry as well as my personal suffering with intractable pain.
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