While recuperating from a recent MS flare, Sally Fletcher texted her new friend Pete Hansen to cancel dinner plans for Tuesday evening, opting instead to rest at home. When Hansen asked her what was wrong, Fletcher told him that the body aches, muscle spasms and fatigue she had experienced in the past 24 hours were enough to wipe her stamina for the rest of the week.
“That’s too bad, but get well soon!” Hansen told Fletcher via text. He felt confident that he was being a supportive friend and added that they could hang out when she felt recovered from her MS.
Fletcher then sent Hansen a link to the National MS Society, explaining that multiple sclerosis is a lifelong chronic condition that affects more than 2.8 million people worldwide.
Hansen texted back, “Well, at least you’re not alone! Actually, I think my roommate’s uncle might have the same thing. I heard him talk about the spasm thing one time too.”
Taking a deep breath, Fletcher tried changing the subject and hoped to end the conversation soon. She asked Hansen if he had watched the new season of “Stranger Things” yet, but Hansen insisted on providing her with unsolicited medical advice.
“You know, I bet with a community that size there’s gotta be someone who could develop a cure. Have you researched what kind of medical advancements there are? Until then, I know a good nap and ibuprofen always do the trick for me when I’m exhausted! Let me know if you need me to pick up some from the pharmacy.”
Three hours after sending this text, Hansen wondered why Fletcher hadn’t responded. He then remembered that the same scenario had played out a few months earlier when he sent his friend with endometriosis an ad for essential oils.
What happens when there is literally no support? Living in a small county in rural Nebraska in town of 28 people? County Officals hold offices but none of them deal with resources, education, information or support in any regards to disability …this means one then must try looking further away…which then you will get the answer sorry can’t help as we don’t serve that county or sorry must be in the state of Iowa or south Dakota to receive benefits or resources….or I’m sorry your outside the limits for coverage area….so then you call Lincoln or Omaha…and I get..we only serve the immediate area…..if you find a bit of info or someone to talk to….they are extremely limited or not helpful at all. So for me it’s not that I’m mentally disabled, now with stage four cancer in Dixon county, Nebraska of all places might as well be Antarctica…as I bet there they actually might have better luck. Nebraska Medicaid is a program that get funds to low income and disabled….and thee worst state agency I ever come across and was actually personally discriminated against by the health and human services offices in south Sioux city as they blocked my calls to their office as my account was very difficult and and only on due to pandemic so I less important to local chapter employees in that regard. I just stopped asking for help locally…and that in itself was a hour and half drive roundtrip to get no help each time.
My point is disability has fails in many different aspects…and if you actually have a case manager or a resource may need consider yourself lucky..as some just go without where no resource or care is given. #nevergonnabefair….#doingmybest2succeed