A dietician and some medical forms

If you read my post on Monday, when I was in tears and in pain all at the same time, you might recall that the absence management company used by my employer denied my most recent absence on the grounds that I am only “allowed” to have one episode per month, according to how they read the form that my doctor filled out multiple times.

Now, I know some doctors are more idiot than useful, but I assure you mine is not. For him (or my neurologist/physiatrist for that matter), I would gladly hand over one of my O- organs should he ever need a kidney or a live liver donor or a lung (I have two). So it irritates me beyond belief that the absence management company sends out a four page form but always bases the determination on one question.

It’s just hard. I work with a lot of people, and few people know how hard it is to have a body that works great one day and completely fails the next. And most of the people who work in the warehouse and have accommodations (because most people who have a permanent and chronic condition don’t want to work in the warehouse) have them for a temporary amount of time due to surgery, injury or pregnancy.

And any time a disabled person asks for an accommodation (like adjustments to a work station or permission to have a tasking canine at their side), there will be other people who take advantage if the system. Everyone’s body is very different, so two people could have the very same condition and still need unique accommodations. And I think some people lose sight of the fact that a reasonable accommodation for a person who needs it makes the situation possible and that it is not necessarily designed to make the situation easier.

When I tell you my leg feels like it’s facing the wrong direction and just drags along like a dead tree stump, believe me. And when I’m standing there afraid my leg may not continue to hold me up, believe me. And when I have to fight with absence management companies and agree to policies that allow me to take unpaid leave in accordance with the conditions approved by the absence management company, because my employer will penalize me if I continue working and meet less than 100% of their expectation… all of that causes me stress.

And I have a neurological condition that prevents my brain from telling my lower body to relax. Do you know what happens then? My discomfort gets worse. It is a big decision for me to tap out of work and use my intermittent leave. I’m losing my job in a little more than six weeks. I have no paid time off because I use it all for doctors appointments.

And to receive an email before I even get home that implies I’ve abused my leave is infuriating. My boss told me to stop stressing so much, that we’ll figure it out. His boss encouraged me to redo the forms again because she doesn’t want my employer to have any reason to question my productivity or attendance. She also doesn’t want me to risk losing my meager severance.

The claims examiner never sent me a new form. I imagine he or she posted it to my file in the app. Because while all warnings and denials come to my personal email, good news and important documents seem to appear in the app with no acknowledgement.

But being me, I kept a blank from last time. I sent that to my primary care physician’s office with a note that I could fill it out over the weekend and drop it off on Monday. Because I don’t want them to have extra work. My doctor’s assistant said that would be good.

And it turns out– I saved a previous form that I modified on Kami. I changed the dates and fixed the offending question and submitted it electronically to the doctor’s office a few minutes ago. I’m emotionally drained and the whole experience has me drained.

Five Tips if you are dealing with medical paperwork & paper pushers

  1. Keep extra blank copies. When you receive a document, try to get an electronic copy and a print copy. Obviously, if you have an electronic copy, you can print one. Print a blank copy and set it aside for your medical provider. Before you interact with an electronic copy, duplicate it. That way if you make a mistake or someone loses something you don’t need anyone’s help to get another copy.
  2. Warn the provider. Call the office or use your electronic patient portal. I had my first intermittent leave form filled out by my neurologist, but had to pay a $25 fee and it took two weeks. The second time (and the third time and now the fourth time) I asked my primary care physician. I know from past experience, he fills it out with me and doesn’t report it to the office so I don’t get charged the fee. Ask if the provider would prefer you book an appointment so he/she can evaluate you, if you can email, mail or hand deliver a copy.
  3. Do as much as you can yourself. At this point, I discuss a lot of these things in the patient portal via “ask a non-urgent medical question” to my doctor, which I know is read by his assistant. I literally start with “This message is for X. I apologize for another paperwork request, but my employer is giving me trouble again.” I send a form I filled out (except for the doctor’s name, date and signature of course) AND a copy of the blank form with the notation “in case my responses are not accurate, hopefully I did not misspeak”). On paper forms, I use post-it notes to direct the doctor to the actual medical stuff.
  4. Record the answers. Part of the reason I can fill out most of these forms is because I keep and file the forms. So I use the doctor’s previous answers and update as needed. That way you sound like your doctor, because you are using your doctor’s language.
  5. Keep copies. I always ask that they leave me a copy at the front desk so I can pick it up. I always point out to them this is not to check up on my physician, but to make sure no paperwork gets lost in the system. I have experienced several instances where the absense management company mislaid a fax, then changed my examiner, who never received a second fax which meant I was mired in paperwork for a month trying to get one of my short-term disability payments. If they give me a copy, I scan it and upload it to them directly, either my email or whatever the primary interface is. And if they lose it, I can email the scans again and not have to bother my doctor’s office.

Following up with the dietician

The dietician called me consistent. I did not lose any weight. I did not gain any weight. But my orthostatic hypotension has all but disappeared. But to maintain that, I need to consume three to four times the amount of salt I have been eating. And monitor my water intake. She perused my macro balance and my diet from the last month and really did call me consistent. So I guess the next step is to deal with my weight.

Speaking of weight, the nachos I had for dinner didn’t help.

  • Cool Ranch Doritoes
  • two slices organic American cheese
  • Sam’s Fresh Pineapple Salsa
  • Spicy Cuban Black Beans
  • Avocado Crema
  • Nutritional Yeast

600 calories. 20 grams protein.

Maybe tomorrow I’ll tell you how/why I missed the event at the Parkland Community Library. Maybe tomorrow will be smoother.

Anatomy of a Sick Day, part 2 (or why people with special needs are exhausted by advocating for themselves)

In the last few months, I made a promise to myself to be kinder to my body and give it more rest when my cerebral palsy-related issues flare. That was part of my logic in filing for intermittent leave, so I could feel less guilty about calling out. Because while I don’t call off often, and while I have a legit disability, I am after all American and consumed with a drive to push myself past pain and perform at all costs.

So the fact that I laid in bed for an hour this morning contemplating the benefits and the detrimental effects of not going to work, and still called out is a big deal to me. Being a good employee is a big deal to me.

But as soon as I posted my last blog entry, Anatomy of a Sick Day, I checked my personal email only to receive an email from my very nice claims administrator for the absence management company hired by Stitch Fix to handle leaves.

My sick day was being approved only as a courtesy as I had already used up my leave time for the year. I had a medical appointment in early November which launched this whole journey (Is it Time for Botox… in my Hips?) and followed up on a visit with the podiatrist where I was diagnosed with two Morton’s Neuroma (The Stabby Toe and The Challenging Gait).

I have chronicled my frustrations with this whole process in blog posts like WTF? Another Cerebral Palsy Aware Day and Toe-Day at Work.

I have had two falls since early November, and significant work changes throughout the fall. My right side has taken a lot of abuse in all of these falls and changes, and my toe still burns more than it should.

But somehow, despite have a neurological condition that has changed my bone and tendon structure, made it difficult for me to walk, and left me with muscles in my lower body that never relax, the absence management company approved my leave for up to three hours twice a year.

SIX HOURS A YEAR.

How is that helpful?!?!?!?

I reviewed the initial letters and paperwork and found that my very, very helpful and talented neurologist wrote that I should have leave for 1-2 episodes per year of an undermined length. She physically wrote in her own handwriting “undetermined” and explained that my cerebral palsy made me an increased fall risk.

And they decided that the only leave I needed was for regular twice-a-year visits to my neurologist. Why would I pay $30 per form to have special leave for two appointments per year?!?!?

To settle my nerves– because even after I wrote back to them that she requested leave for episodes not appointments they would not budge and said my only recourse was to have more paperwork completed, at my expense– I called my blind friend, Nan. Nan has a lifelong history of advocating for oneself and at this point even she is frustrated and exhausted by the constant mental gymnastics it takes to get the most basic attention.

She moved to a retirement community in September, since as a blind person she will lose her independence if she relocates at a period of time when she no longer can re-learn a setting. She told me how she asked an administrator to read her the activities calendar. The administrator read her one week. And told her to call for help getting more info.

At this point, it’s been almost six months. Nan’s rent is significant, and it would have taken 5-10 more minutes for the administrator to go ahead and finish the month. Yes, Nan can call someone to update her on the day’s activities, but as someone who never neglected to point out the accommodations she would need, shouldn’t some of this help be automatic by now?

Anyway, I’m going to download the medical forms and start filling them out myself, and see if my PCP will just sign them.

Ridiculous.

Sunday Funday paperwork

Day 2 of my Washington DC mini break.

I slept so well that when I woke I had forgotten I wasn’t at home. M had a glass of water and a clean coffee cup waiting for me when I emerged from the bathroom. Then, as is custom, we chatted for a couple hours

PJ and Princess

I brought my other traveling companion with me, many of you may remember PJ the bear. He brought his girlfriend, Princess.

So while PJ and Princess are lounging in bed, doing whatever naughty bears do, M tackled some of his upcoming travel arrangements and I filed not just federal but ALL my taxes.

I win adulting for the day.

I rewarded myself with the oatmeal cookie M bought me last night at the 7-eleven. Which turned out to be a very tasty cookie.

Poached eggs with the hottest sauce ever

So now that our big adulting tasks arrived done, M has made the perfect poached eggs and offered me some killer hot sauce.

Death by Wings