A few weeks earlier I’d had an “impartial functional assessment” by a disgruntled CCME-sponsored-and-paid nurse (how the “impartial” part comes into play here, I still don’t understand). I had put roughly 60 unpaid hours of time over the last several months into getting this assessment for home services – phone calls to doctors, CCME, Medicare, Medicaid; faxes to and from doctors, CCME, other entities; Emails to social workers; more hours chasing peoples’ tails and barking because doctors and staff weren’t following through and were actually lying to me about submitting info that wasn’t submitted… I even had to teach people at my doctors’ office how to submit which forms to CCME to get the evaluation process started; something most patients wouldn’t have the knowledge or patience to put together. Let’s just say, I had hit a new high point with stress and I dumped my primary care doctor’s office for a new and smaller one where people who care actually answer the phone and follow up in a reasonable time frame – the best move I’d made in a LOOONG time.
I now wish I could get those 60 hours back….
The nurse who arrived told me point-blank that she was old (I knew better than to agree) and tired and wanted to retire when I asked her how she was that day. “Oh, I’m sorry to hear that,” I said, the smile melting crooked off my face. I was amazed that a professional had just revealed this information to her client…something I never would have done when I was working in the medical field, even if I felt it was true. She was typing information in the laptop computer she’d brought. The purpose of the visit was to determine if I needed home health services.
She asked for my diagnoses. I had them written down because even I can’t remember all of them all the time. I got to the place where I had to tell her about gluten ataxia, “When I get even a few molecules of gluten, my auto immune disease attacks my brain, my cerebellum, and I lose my balance, I lose my coordination, and I have intolerable pains everywhere, my eyes shake with nystagmus, and I’m bedridden for several months at a time. That’s why I ask people to wash their hands when they come in.” The sign on the front door of my home says “Please wash your hands…Thanks!” but when she saw the sign upon entering, she asked, “Do I really have to wash my hands?” I said, “If you don’t touch anything, I guess not.” I was surprised, in a negative way, that a NURSE wouldn’t “obey” the clear household rules established to protect MY health. As I began detailing the repercussions of a few molecules of gluten upon my health, she said, “I should stop and wash my hands. I was just out in the car eating crackers and I got crumbs all over and wash brushing them off before I came in.” Aaaahhhh! It’s one thing for me to be around people in another environment where I know there’s gluten everywhere and I’m actively protecting myself…but it’s a totally different situation when other people are bringing it into my home, my bubble-like “safe zone” and I am not on the alert. I said nothing as I began making my own mental notes of everything she didn’t realize she’d touched since she entered – the door, the couch, resting her laptop (which SURELY had gluten on it) on my couch and side table, the pen I used to sign the documents…planning a “deep clean” after she left.
When I told her I had CRPS, she began to say, “I’ve never heard of that…what’s that?” and then as I started to explain she cut me off curtly as she sent vibes of annoyance. “Oh, it’s okay, I don’t need to know.” My eyebrows climbed up a step in bewilderment. You don’t need to know, and yet you’re here to evaluate how my disabilities affect me so that you can determine what level of care I may need? This is a bad sign…a REALLY bad sign. (As if all the previous signs hadn’t been bad enough. Oh, wait, you’re telling me “this nurse was sent from the Center for MEDICAL EXCELLENCE – look at her pretty and OFFICIAL name badge”…oh, sorry, I cower in my indiscretion ..I should not have doubted your superiorly wise ability to provide an “impartial” and “professional” assessment, so sorry.)
I answered the nurse’s questions honestly, keenly aware of what a home health agency had told me the week earlier – “Remember, give less info, not more. Don’t volunteer information. The less you can do, the more likely it is you’ll get services. This isn’t the time to show the CCME nurse all the things you can do.” Though this agency had not told me to lie, neither had they told me to be honest, and my conscience revolted. Therefore, this agency wasn’t my first pick if I was approved, for if they were encouraging me to be less than 100% honest with CCME, how % honest could I really expect them to be with me when the chips were down? I didn’t volunteer more info than was asked of me, and I made sure I told her honestly just how BAD the BAD days really are, but I also did answer each question honestly without an intent to deceive. I knew the result of this assessment was in the hands of the Lord, and I trusted Him with it.
Long story short, she told me she didn’t think I’d get services; I wasn’t disabled enough. My face was stone serious. “I feel like agencies enjoy putting me into a box. I don’t fit a box because I AM HUMAN. I don’t fit a list or a drop down menu either. I’m ME and my needs change EVERY DAY. At this point I feel like if a person isn’t dribbling drool from their chin to their chest and muttering incoherently to nonexistent beings (no offense intended to those who are), they wouldn’t stand a chance to get ANY help! And the system punishes those who are trying to do the very best they can for themselves by NOT helping us do better when that is our primary goal…SO WE CAN GET OFF THIS NOT-SO-MERRY-GO-ROUND.” She told me I was just about right. How encouraging.
Perhaps working for such a shoddy “system” and daily refusing much needed care to people who would, by any humane treatment standard, clearly qualify, was what had transformed her into an old, tired, discontent grouch who pined away for retirement and collecting sea shells. Every day, for the last 25+ years, she had chosen to call this sick job “nursing” while every aspect of it went against the very reason she likely became a nurse in the first place. She knew what it was like to be “stuffed into a box” herself, by the very agency which employed her to be “impartial”. Oddly enough, I felt a sad compassion for her, for the very person who had lost her ability to feel the same.
The letter offering help and a hand up or a slap in the face now rested on my kitchen counter. Should I open it? I was almost sure I already knew what it said. I passed it by a few times, doing other things, until I gathered up my guts. I slipped the letter out of the envelope and immediately discarded the envelope, trying to ignore the rush of emotions as I unfolded to read the letter.
I didn’t need to read any more. I already knew I had the right to appeal within 3o days and the right to a hearing. I pressed the folds of the closed letter so that it would stay quite sealed, hoping to seal my spinning emotions back into the paper…but this letter was something of a pandora’s box.
In Matrixesque fashion, all around me, spun visions of past situations when I’d asked for help and I’d been denied, refused, or turned down due to disbelief. People who COULD have helped but who chose not to, again and again. I had to pull out my most refined Matrix moves to avoid getting sucked into any of the vortexes around me which would have had me brooding over offenses past; I was also trying to Matrix-dance around the invisible laser beams of “justified” bitterness. Ah, it’s never JUST a physical war with my health, is it?
Boy do I need you, Lord, like RIGHT NOW, I prayed. I said that I would trust You with the results of this assessment, and that’s what I’m choosing to do. But even more than that, right now I need You to guard my heart from evil and bitter thoughts. Help me remember that I can trust You for the outcomes of all those past offenses as well. I need you to tell me what to do next. Should I fight this rejection through the appeal process or let it go and put out the other fires?
I continued to pray for another two weeks before I felt peace. I felt peace about God’s provision in other forms, though I didn’t know how. I felt that He didn’t want me to strive on this particular item. During these two weeks I remembered my original prayer before the assessment – Father, I’ve tried to do what I believe is responsible in my situation; I’ve sought help. I’ve spent hours tracking this down and have hit road block after road block, and I’m exhausted. It’s taking an emotional toll on me too. I know that, regardless of the decree, You are the one who moves the heart of the king, so I want to ask You to make the results of this evaluation final and give me peace about accepting it either way so I can move on. If You do want me to fight a “no” then please be very specific and clear so that I understand what I need to do. If you want me to refrain, that’s fine. I will do either in faith, but I need a clear peace and direction that can only come from You.
Remembering these prayers and trusting God for the results set me up for the next leg of this journey (pun almost unintended…almost). When the peace came about letting go of my hope of home health, I prayed again. Some days are a constant breath of prayer, of necessity, of dependence upon God for every little thing.
Ok, Lord, I’ve heard You. Thank You for making Yourself known to me and for leading me to the right and to the left. I don’t know how You are going to provide for me, but I have no doubt that you will…at least at the moment I have no doubt though I can’t say I won’t doubt tomorrow! But anyways, God, I’m waiting for you to show me the next step and I’m willing to take it. Help me not be anxious, but to embrace a simple faith and trust.
I’m excited to tell you how God answered…in the next post. 🙂
Psalm 121:1-2, 7
I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
The Lord will keep you from all evil;
he will keep your life.