Don’t Lose Your Wings Until You Learn How to Sing Yourself to Sleep

Everything feels so bittersweet. I am at a crossroads with finding my diagnosis. I know what NEEDS to get done next, I’m just not sure HOW to get there from my current situation. I’m at a standstill.

I saw my primary care doctor yesterday to get a note back to work. I’m officially running out of money, having not received a paycheck in over two months. I couldn’t prolong it any further. While I love my job, I still feel incredibly awful all the time, I still have testing and doctor’s appointments scheduled every week, and I am coming back without a diagnosis. I’m feeling pretty bruised and defeated about this. Nothing has gone as planned and I’m just left to wonder, How in the hell am I going to do this? 

To be honest, I’m barely getting though my days without work and now I have to find a way to add more into this hellish thing I call my day-to-day life. Trust me when I say that my medical leave was neither relaxing nor helpful in any way, shape, or form.  And all I’m coming back with is more questions, fewer answers, and even more anger than before. I’m handling everything the best I can, but I don’t know how much longer I can hold on to any hope when I keep getting beat down. So let’s add extra stress and worrying about not losing my job due to attendance, finding time for appointments so maybe one day I could feel better, and not sacrificing the amount of health I have left.

So back to my doctor’s appointment. I needed to get a note allowing me back to work, as well as my husband’s FMLA paperwork that needed to be updated so he could continue to take me to appointments. They couldn’t get me in at the clinic closest to my house, so I had to drive 30 minutes away to go to the south location. The weather has been absolutely crazy this week (snow, wind, hail, thunder, lightening, tornadoes, etc) and it ended up taking me just about an hour to get there. I almost didn’t go because I had such bad cramping from the endometrial ablation, and I was just overcome with dizziness and nausea, so much so that I didn’t sleep even a single minute the night before. It was hard to muster up the strength to get into the car and drive there, with tears welling up in my eyes, knowing I had to not only deal with this doctor (who has given up on me and my illness) but had to ask for something that I know my body is not ready for. Just so I can get a paycheck.

The office is surprisingly slow (more than likely because the weather was awful) and the nurse gets me back rather quickly. She take my vitals, and puts me in a room. I hand them the FMLA paperwork, with the previous paperwork so that it doesn’t get messed up, and the note that my therapist wrote advising I start Part Time to adjust back to work, as she doesn’t think it’s safe for me to do 10 hour shifts, especially right away. I agree. The nurses step out of the room and  I wait. And I fall asleep in the chair sitting up because I’m exhausted and in pain. It takes them a full hour to hand copy 3 pages exactly as they had done before. They tell me the doc is just completing my note for work and I’ll be good to go.

The doctor never comes into the room. She’s in her office somewhere. I planned to see if I could ask her about some of the new symptoms, but it’s lunch time at this point.  

  • My occipital lymph nodes keep swelling after I have any testing or procedures. This just started in April.
  • I’m getting a flushing, red rash across my cheeks and nose almost daily now.
  • I had this sudden onset of extreme burning with a red rash on my extremities that seems to come from nowhere. It itches and burns real bad, and it has these tiny broken red blood vessels throughout. 
  • I’ve had ongoing olfactory hallucinations for months, but she hasn’t asked me or seen me to discuss. I keep smelling either dirty, wet sock/feet or electrical fire. It comes on so quickly and hard, I’ve found myself jumping out of bed searching the whole house but no one else can smell it.
  • My at home testing/finding that may explain the cause of each and every one of my symptoms.

The nurses tell me I am ready to check out. I ask the nurses about the lymph nodes, considering they’re hurting harder than when I first arrived at the office, and I’m hoping maybe they’ll get the doctor I can’t see around anywhere. I know she’s somewhere because she signed all the paperwork. They joke that my body does weirdest things, but they really couldn’t tell me why that would happen. One of the other nurses, whose last day was yesterday (which I can’t blame him for that), says he has an idea about what I have based on my symptoms but I’d have to bring that up with my provider. I try to probe more, but he won’t tell me anything more, and I’m not sure if he actually thinks he knows what it could be or if he’s mocking me as if I’m crazy. My PCP then sticks her head out, yells that my lymph node swelling is normal. If they stay swollen longer than six weeks, then come talk to her. She shuts the office door. I give up and leave. I look at the paperwork. She copied word for word what my therapist wrote, only on their letterhead. It doesn’t have any specifics on it, so not sure if work will accept this or not, but I’m not turning around.

I wish I had been more assertive and demanding, but it wouldn’t have done any good. She doesn’t care about how I feel or what’s going on with me. I’ve seen her fire clients before and right now I need her, if for nothing else, my medications.  I still need two referrals, but I can’t get them. I want to report her. I want to fire her. I want to write her a letter about how awful I feel after going there. I want to tell the world to avoid this place. How she can approve me back to work without examining me? I brought copies of the most recent tests and discharge papers from the hospital, they didn’t need them supposedly. It doesn’t matter that I’m bleeding harder and cramping more than the first day of my surgery. It doesn’t matter that the syncope episodes are becoming more frequent. Or that I’m seeing colored light bouncing in my vision often, daily. That I still can’t eat without getting sick, so I won’t be able to eat when I am at work or I’ll be in the bathroom all day, and yet again risk my job. She just doesn’t care. And I suffer because of it. 

I worry about the future. What if I lose my job because you didn’t do yours? What if I can’t go to work? Your lack of proper medical notes will kill any part of getting disability, not that I want to go that way. I just want to feel better. I want my healthcare managed. I want to know that no matter what I have, I’ll be OK. You have killed that for me. More than likely, you are slowly killing me too. I’m angry but I have no idea what else to do. I call doctors everyday, trying to find something better. They won’t see me or can’t see me for months. I need help and you have abandoned me to find my way with the current state of healthcare. And there is NOTHING I can do about it, which is the worst part of all. 

“Cover me in fire
Drop me down to the deepest darkest ocean
So I never have to feel that way again
Color on the carpet seven eyes on the ceiling
There’s a feeling that comes over you

When you know that
Something has changed forever
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Please don’t bring me down
With that look on your face
Because I almost didn’t make it and one day
You might know how that feels

I heard the mermaids singing once
When I was very small
But now the sound of the traffic and human voices
Wake us ’til we drown

Don’t lose your wings ’til you learn
How to sing yourself to sleep
I know it seems funny but
Maybe we just said goodbye

I feel strange enough to cry
Strawberry marigold smile
Seven angels seven plagues
And the trumpet and the saved

I tell you man if it was me on that beast
I would not let you fuck with me like that
It’s dangerous to see beyond
The visions that we breathe

But I can hold it in my hand and know
That there is something to this that will never die
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Strawberry marigold smile
Strawberry marigold smile”

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