Thursday, March 29, 2018
My pediatric GI doctor talked to me and my parents about my chances for Social Security Disability (SSD) Benefits to ease the financial burden associated with my chronic illness since I was a child. I grew up hearing about how I would be able to obtain SSD benefits if I applied. My parents opted to never apply for SSD benefits for myself as they didn't want me to see myself as different from other children and teenagers and were fortunately financially able to withstand the financial burden my health placed upon them.
For me, SSD benefits was never an option truly placed upon the table but I also knew that my doctor and my parents hoped I would be able to physically complete my schooling and obtain full time employment and become a financially independent person - but that this was not a given but rather a hope as none of us were sure how my health would withstand the such physical stress.
So I put forth my full effort into the tasks of life. My parents home schooled me for a year in grade school due to my health not allowing me to meet the attendance requirements of public school during the first year of my surgeries. And in high school I risked inability to graduate on time during another physically trying year with medical tests, procedures, surgeries, and multiple hospitalizations. I was only able graduate high school due to the kindness of one of my high school teachers agreeing to tutor me during my home study absence period.
In college, I endured regular hospitalizations due to difficulty maintaining my electrolytes. My college professors worked with me to allow me to complete my assignments and exams around my hospitalizations as needed. My health stabilized the year I graduated college affording me attendance to graduate school and my practicums with minimal difficulty.
However, when I started my first full time job the stress would become too much for my body. I was traveling around the state on a daily basis, even to the borders of my state on a bimonthly basis. My employer was not overly accepting of my health. After consulting with my parents about my health and financial situation, I was forced to resign for the sake of my health.
I was not defeated though. I allowed myself a month of rest before re-entering the work place with a different employer. I had learned new ways to cope with the stress of full time employment and how to deal with an employer. I succeeded at maintaining my health even when this employer entered the realm of a hostile work environment. I found a new position with yet another employer who works with me on my health issues and have been able to maintain full time employment ever since without difficulty for 7 years now.
With abrupt health changes over the last two years, especially during this year, I began to worry about my ability to maintain full time employment. Without my employment I would become dependent upon attempting to obtain SSD benefit approval and assistance from my parents in the meantime. SSD benefit approval is not necessarily an easy task to achieve and can take years. Even after approval, you are often required to wait another two years for Medicare health insurance to become available.
divorced, I was accepting that I am solely responsible for my financial well-being regardless of my health. I would be at greater risk of my greatest fears becoming a reality if unable to maintain employment. When I divorced, I learned a new level of independence that I vowed to fiercley protect and cherish for all my days on Earth even if that I meant I had to work until my death. No longer would I allow myself fairy tale dreams of being a stay at home wife - I would forever be a working woman for as long as I required and am able.
And with this new attitude and determination, I admit that I live to work. It's not out of enjoyment or because I'm a workaholic but rather out of necessity for my surival and mental sanity. My health has always been unpredictable causing my future to be unpredictable. I will ferociously hold onto the few things I can control in my life with an intense tenacity. It is due to this outlook, that I dismiss others when they say it's no life to live to work. For others this may be true, but it doesn't hold true for me. Rather, I increase my ability to survive physically and mentally when I focus on maintaining my employment ability for as long as I am able - even if that means I work past retirement age. The more I work, the more financially stable I become, the more I am able to prepare for the uncertain turns my health will take that is chronic illness.
Thursday, March 8, 2018
Nausea is easy to understand, right? It's simply of feeling of sickness with the inclination to vomit. Seems pretty straight forward. Not so much for me though, at least not my chronic nausea.
For me, chronic nausea is something different than just the inclination to vomit. It's different from nausea that can accompany a stomach virus, food poisoning, or over indulging on alcohol. I don't typically even vomit from my chronic nausea. My mouth doesn't start to salivate in preparation for the impending upchuck, I don't start heaving, I don't have to stop talking or risk vomitting. None of the usual signs I experience when I'm inclined to vomit. No, typically if I were to vomit from my chronic nausea, it's because I forced myself not because my body forced me. Although, frequently I wish I would vomit when I'm nauseated as I believe it would help provide relief. This is a predicament I find myself struggling with regularly and unfortunately, not new to me.
Instead of the typical response to nausea, my whole body reacts to my chronic nausea. My nausea has various triggers and although I can usually predict when the nausea will hit based on my behaviors, it is not always known to expect it crashing in upon me. Ingesting food or liquid often triggers the nausea as it fills my stomach and causes discomfort or if I become overheated I will become nauseated. Other times physical or visual motions will send me overboard. The slightly shaking is too much for my stomach and at times even the movement of a computer mouse or the scrolling of a computer screen will act as a trigger. And even with these triggers, there are times that I will simply awake nauseated. But whatever the reason for it, it always feels the same.
Typical nausea that subsides upon the expultation of the irritating source, I would welcome that. But that is not my experience. I can usually feel the nausea crashing over my body like the waves of a tide. I feel like complete and utter rubbish when the nausea hits. My body has a generalized, overwhelming sickness to it; my stomach hurts and feels uneasy, I feel full and bloated. On particularly worse occasions my head will slightly hurt and if I close my eyes to rest, I feel as though the room is spinning about me. I feel as though if I could just vomit or empty my bowel, I would feel better. I have the urge to lie down in a ball and hold onto my stomach. At times it becomes too much and the tears fill my eyes as I'm overcome with frustration at my physical status.
I regularly utilize my anti-nausea remedies- Compazine and Phenergan tablets, peppermint candies, and Peppermint Oil. I even have Phenergan gel as well. But nothing makes the nausea dissipate immediately, it's a gradual overthrowing of the nausea. And in the meantime, I'm left wanting to make myself vomit in an effort to make it stop yet knowing that it's not healthy to make ourselves vomit.
The chronic nausea is there with me, almost every day without warning, it is never cured. It's simply managed and so I must continue functioning in spite of the discomfort. I can't stop living my life or completing my responsibilities over nausea. In spite of my efforts to fight through the nausea, there are times that it is simply too overwhelming and all I can manage is to rest. But it sure would be nice to return to my pre-chronic nausea days.