Stacy Ellingen

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Stacy's Journal: Facing Adversity

2019-01-27
By: Stacy Ellingen
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Ever feel like you’re on an uphill battle with no clear end in sight?  I think everybody has at some point in their life.  Whether it’s with health issues, relationship issues, financial issues, work issues, or a combination of things, most people face some kind of adversity during life.  I like Robin Roberts’ quote: “Everybody has something.”  Although it may seem like it, nobody has a perfect life.  Every single person has some adversity.  Obviously, there are many different perceptions when it comes to the challenges people face.  What may be a major crisis to one person, might seem like a small bump in the road to somebody else.  It’s often assumed that people with disabilities face more challenges than the average person.  Regardless of what the issue may be, facing adversity is part of life.

Why am I writing another entry about dealing with adversity?  It seems like it’s often the general topic of most of my articles, right?  Yes, I’m well aware of that; it’s my hope that I’m helping spread awareness by sharing my perspective and experiences.  I feel that facing adversity and sharing how one perseveres through it is a key part of advocacy.

The past two months, I’ve faced my fair share of challenges.  In past entries, I’ve discussed how my parents and I were looking into different care options.  Long story short, in the beginning of November, we thought we had found a home care agency that billed Medical Assistance that could meet my needs.  My mom and I met with the nurse in mid-November and did the initial assessment.  Many calls and emails with the scheduler were done, and it was eventually decided that their workers would shadow my Self-Directed Personal Care (SDPC) workers the first two weeks of December and then the agency would take over the first week of January.  I had a planned surgery scheduled in mid-December and had planned to be at my parents a few weeks recovering over the holiday season.  I thought things were lining up just perfectly.  I’d end with my SDPC workers (besides my parents) right before surgery, have the surgery, recover and enjoy the holidays at my parents, and start with the agency in the new year.

In late November, I had to let my SDPC workers know that people from an agency would be coming in to shadow and that the agency would be taking over in January.  It was really hard making that announcement.  I felt absolutely horrible having to let them go, but I was hopeful that this would be the answer to my situation.  December came and the agency started shadowing.  They had four or five people come in during various shifts.  Admittedly, it was a little awkward having the agency workers observe the people who were losing their jobs, but the workers understood and made the best of the situation.  It’s never easy having new people take care of you, but training was going ok until the second week in someone from the agency said, “we can’t give meds, so I don’t know what they’re going to do.” Wait!  What?  I take multiple medications each morning.  Obviously, I can tell people which medication I need, but I physically am not able to put pills in my mouth.  I had my mom call the office right away and she left a message asking about it.  A few hours I received an email saying that was correct—their workers cannot give medication.  They wondered if I could have somebody come in and do meds each morning before the morning shift.  That totally defeats the purpose of having an agency!  With other agencies I’ve had, they’ve had a nurse set up the meds in pill containers for two-week time periods, and then the workers could give me pills out of the container rather than from the med bottles; however, this agency didn’t even allow that.  There was some major miscommunication along the way because when mom and I initially met with the nurse, she physically had the pill bottles in her hand and wrote down each medication, but never said their workers couldn’t give meds (and we discussed how I have to have somebody feed me).  Furthermore, what’s crazy is that med administration is listed as a class they offer for workers on their website!  After I got the email, I called my parents freaking out—what were we going to do?  I had given the four or five SDPC notice and hadn’t hired anyone new in months anticipating switching to an agency.  Luckily, my great parents drove up and we devised a plan.  I had no choice, but to stay on SDPC and keep hiring my own workers.  Thankfully, about three of my workers were still interested in working with me.  We’re back to hiring people and scrambling to fill shifts, but it’s our only option at this point.  This not only affects me, it also affects my parents.  Especially with the cold weather here, being newly retired, they desperately want to travel; however, with the uncertainty of my care situation, they can’t leave the state.  It’s very frustrating for both them and I.

In addition to the care debacle, I’ve had some unforeseen health issues arise.  The planned surgery in December to replace my Baclofen pump (which drips a muscle relaxant into my spinal fluid) went fine, but a few weeks later, my muscle spasticity went haywire.  After trips to the ER and multiple tests, it was thought I needed another surgery to correct the pump.  They went in and checked everything out; it turns out everything looked fine.  They aren’t sure what caused the drastic increase in spasticity, but now I have steps I can take to help decrease it when it happens.  While I’m glad we have solutions to help with the issue, it’s just one more side effect of cerebral palsy to deal with.

My wish for a fresh start in 2019 didn’t happen like I had hoped.  In fact, its been just the opposite.  Life throws people all different kinds of curves.  People deal with challenges in many different ways; some good, some bad.  People’s true colors show when they’re faced with adversity.  Although, very hard to do at times, when we’re faced with unforeseen challenges, we must put one foot in front of the other and persevere. 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

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