The harsh reality of being me


I’m not looking for sympathy, cheering up or comments trying to debate these real possibilities. I have found that getting my hopes up does much more harm than good and although I always hope for a positive outcome, being realistic is a healthy way of thinking. Many of those I know prefer living in denial. That’s fine, but that has brought me even more heartache than hope has.

Here are some facts and ideas that have occurred to me regarding my life as I now know it and what my future may hold:

• In just a few months, my condition will likely leave me homeless as I can no longer manage in an inaccessible (and abusive) home.

• I have no money and no relatives who could take me in or help out in this regard.

• Our government and social services do not care about the disabled or impoverished.

• Being diagnosed as an adult kept me from being eligible for studies and treatment that are only available to pediatric patients.

• Domestic violence organizations, are in large part, only funded to help those in “intimate partner violence” situations. They have refused to help me.

• I will never drive and always depend on others for transportation. If my disease continues to progress as it has been, it will have to be specialized transportation.

• The are no EDS specialists in the entire state of New York and on the off chance a team of doctors outside my area would agree to a consult, I could not afford the travel and related expense.

• ER docs don’t want to deal with a disease they know nothing about and I fear that they’ll ignore or dismiss my symptoms someday and I will die as a result.

• I can’t go to beaches and parks unless I just want to be a spectator. I used to live for the outdoors!

• I will have to give up goals for new ones due to my sudden change in physical ability. AND I will likely never worked as a practicing esthetician.

• Money makes things happen and if you have none, you need to manipulate the system and I haven’t a clue how to.

• If I was a loser druggie, I would get the assistance needed as far as housing and both physical and mental health.

• At this rate and in these living conditions, it is likely I’ll required use of my power wheelchair all the time or be resigned to die in my prison of a bed. I cannot even stand to take an 7 minute shower.

• A relative of mine with actual connections, who could help me get needed information on housing have decided they do not wish to help.

• Politicians have proven useless.

• I will never give birth to my own children.

• I am seen as a burden and have lost friendships and relationships and will always struggle to find the people who care enough to accept me for who I am and what I can do.

• I may never be financially stable enough to adopt my children.

• I may die suddenly and unexpectedly die to the unknown course my disease could take.


2 thoughts on “The harsh reality of being me

  1. I agree with “army of Angels”….you still have hope or you would not be writing this Blog! After reading these last 2 posts, I have an idea……up the pain meds & become a user druggie, then get the help you need ! (Hope that at least makes you smile!).


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