sparklehoof
Senior Member
- Messages
- 186
- Location
- North Carolina
Hi Friends,
How do you make plans to and set goals for your long term future with regard to promise that there will be a cure or treatment that isn’t currently available?
My situation is that I became sick as an adolescent and my symptoms have been at a 70%-80% on the MEA Scale since they began in 1999. I’m in the US and receive Social Security, but it’s still well below the poverty line. I’ve been very fortunate that my parents allow me to live with them so that I can use my income on healthy foods, supplements, transport and a phone. (All of which I’m extremely thankful for.)
Like many of us or probably most of us, I kept thinking that I would improve and be able to finish school, support myself, have hobbies and maybe meet someone and have a family. As years went by, my healthy friends and friends with similar illnesses achieved these milestones. By my mid-thirties, my biological clock only had so much time. If only we could negotiate with our bodies and say:
———
Dear Body/Me,
I’ve been in a little traffic jam and haven’t moved for about 18 and a Half years (1/2 my life) and so I’m running a little late for my life goals. These future experiences are still very important to me and I promise I’ll be there as soon as traffic starts moving.
In the meantime, could you grant me an extension on my life expectancy and increase my egg count by about 25 more years? This may enable me to attend my undergrad prerequisites, go through medical school and residency, repay my college loans and provide for myself financially and maybe start a family?
Thanks so much,
———
At 38, I still haven’t been able to sustain any kind of work. My parents are in their mid-70’s and if they need to move to a retirement community/senior housing/nursing care, I will need to try to move to public housing and may not be able to afford to pay for my specialty medications, see my doctor out of state, or have transport or access the internet from home. I’ve been so fortunate to have these privileges and luxuries, that I have a lot of fear about going without them while being sick. I didn’t fear these things when I was healthy, because I felt less vulnerable and more self reliant.
At this point, I’ve wondered things like, “if I go to school one or two classes at a time, take out loans, and finish my degree in about 10 years, might their be a new treatment that could make me well enough to work and earn enough to repay the loans and meet my basic needs without going into a push-crash cycle by trying to work too many hours?
I wondered how other people who are single and became sick before they finished school, had partner or career think about milestones like these. Do you try to get an education in hopes that you’ll be more qualified for a higher paying job (given that you’re hired and will become healthy enough to work), Maybe by the time you finish school there will be a treatment that makes you well enough to work? This way, you can start working as soon as a treatment is available. Or do you take a “safer” option in which you avoid taking on responsibilities that are too much for you with your health as it is such as going to school or starting a family?
How do you make plans to and set goals for your long term future with regard to promise that there will be a cure or treatment that isn’t currently available?
My situation is that I became sick as an adolescent and my symptoms have been at a 70%-80% on the MEA Scale since they began in 1999. I’m in the US and receive Social Security, but it’s still well below the poverty line. I’ve been very fortunate that my parents allow me to live with them so that I can use my income on healthy foods, supplements, transport and a phone. (All of which I’m extremely thankful for.)
Like many of us or probably most of us, I kept thinking that I would improve and be able to finish school, support myself, have hobbies and maybe meet someone and have a family. As years went by, my healthy friends and friends with similar illnesses achieved these milestones. By my mid-thirties, my biological clock only had so much time. If only we could negotiate with our bodies and say:
———
Dear Body/Me,
I’ve been in a little traffic jam and haven’t moved for about 18 and a Half years (1/2 my life) and so I’m running a little late for my life goals. These future experiences are still very important to me and I promise I’ll be there as soon as traffic starts moving.
In the meantime, could you grant me an extension on my life expectancy and increase my egg count by about 25 more years? This may enable me to attend my undergrad prerequisites, go through medical school and residency, repay my college loans and provide for myself financially and maybe start a family?
Thanks so much,
———
At 38, I still haven’t been able to sustain any kind of work. My parents are in their mid-70’s and if they need to move to a retirement community/senior housing/nursing care, I will need to try to move to public housing and may not be able to afford to pay for my specialty medications, see my doctor out of state, or have transport or access the internet from home. I’ve been so fortunate to have these privileges and luxuries, that I have a lot of fear about going without them while being sick. I didn’t fear these things when I was healthy, because I felt less vulnerable and more self reliant.
At this point, I’ve wondered things like, “if I go to school one or two classes at a time, take out loans, and finish my degree in about 10 years, might their be a new treatment that could make me well enough to work and earn enough to repay the loans and meet my basic needs without going into a push-crash cycle by trying to work too many hours?
I wondered how other people who are single and became sick before they finished school, had partner or career think about milestones like these. Do you try to get an education in hopes that you’ll be more qualified for a higher paying job (given that you’re hired and will become healthy enough to work), Maybe by the time you finish school there will be a treatment that makes you well enough to work? This way, you can start working as soon as a treatment is available. Or do you take a “safer” option in which you avoid taking on responsibilities that are too much for you with your health as it is such as going to school or starting a family?