Skip to main content

But I Can't Cry



There is only one thing that exists in this entire world that provides clarity to this disease. I know, without a doubt, that crying triggers a migraine worse than any migraine I regularly experience. Strong enough to remain more powerful than any combination of drugs or essential oils or hot showers or ice packs.

So here I am.

Oh my god I would give anything to wrap up in my blanket and shove my head into a pillow and have on of those really deep, really painful cries where I end up screaming into my pillow until I fall asleep because crying has taken it all out of me.

But, you see, I can't do that.

I can't justify the amount of pain I'd be putting myself through, just to allow myself to cry it out.

I quite literally have an extra sinus cavity that flares up and blocks the larger sinus cavity from releasing snot, which creates a really unbearable migraine that only time can alleviate as the swelling goes down.

My new doctor didn't tell me that in order to get these infusions to help stop this intractable migraine I've had since September that I'd need to go through with a series of tests and get bloodwork done. No, he responded to my saying I was starting a new job so I couldn't go through with it until I spoke with my new boss, with "call the office once you talk to your boss and we'll continue with this process then"

I got my start date pushed back 6 days. That alone was a conversation that made me want to burst into tears. My new boss seems amazing and understanding and happy to work with me, but I had to request an accommodation before I even started. Screw this condition.

But when I called the office, no one was there to answer. Their lines were busy and my voicemail message was probably never even listened to.

Now its Friday morning, I've left another message and reached out via the online "Ask a Question" portal. Now its noon. I receive word, through the online portal, that I have to complete the ordered tests before they can send orders to an infusion clinic.

THANK GOD THE HOSPITAL ALLOWS WALK INS FOR LABS AND EKGS.

But, now we have the problem where I left the hospital at 2:30PM on a Friday.

My test results weren't even sent to my doctor until Monday morning. You know, the Monday morning I anticipated starting the infusions.

I called the office 3 more times and sent 2 more messages.

It's 3:30PM on Monday. I've finally heard back. My doctor is out of the office all week. They're waiting to hear back from another doctor regarding the tests before they can send in the orders for the infusion clinic.

I can go through with only 4 days of infusions rather than 5. But what are the odds orders will be sent and that the clinic will even have openings throughout the rest of this week? I'm thinking kinda slim.

So here I am. Finances stretched because I should have been enjoying my first day on the job today. Emotions stretched. Patience most certainly stretched.

I'm beginning to think that sitting at home in limbo is actually making my migraine worse. At least if I was out moving around I could say I accomplished something.

I don't think I'll get to go through with this procedure. I certainly can't afford to push back my start date even further.

Maybe I'll get in this week. Maybe the orders will have a time frame on them and I'll discover that my work schedule has a four day period in between work days (improbable) that I can schedule this procedure for sometime next month.

But right now, I just want to cry. I want to let all my emotions go crazy. I want someone to hold me as I shake because I'm allowed to be upset and disappointed and overwhelmed and scared and unhappy and sad.

But I'm not allowed to cry.

-A

Comments

Popular posts from this blog

Positive Notes

Here I go mixing things up before things have really taken off. My featured picture is intended to represent the way chronic illnesses and disabilities are only really seen in black and white. My words are intended to fill in all that grey space that is ignored. But today I needed a little color. Because at the end of the day, there's a lot of brightness and light and hope that is key component to my every day battle. So here's a sneak peak and my brand new apartment. I think I've spent the last 4 or 5 years waiting for the day that I had a place of my own. Not because I wanted freedom to do what I pleased or had the same urge to be an adult and do adult things. I in no way want to make anyone think that adulting is fun or recommended for anyone. I didn't want my own place. I needed it. I needed to not have to snarl at my parents for running the garbage disposal or cutting the grass when my head hurt too badly to get out of bed. I couldn't take one more la...

It Hurts

To say I feel less than human, is probably a bit of an understatement. But I do. I've been home for a week. I've managed to pretty much lay in bed in agonizing pain the whole time. I had a half-assed attempt to see a friend that resulted in me rushing home as the nausea and aphasia set in. I successfully made it to massage therapy today. Which meant even after sleeping for roughly 2 hours, I got up at 7:30 and sat in traffic for hours to get to a less than expected appointment. Mind you, my previous massage therapist was so wonderful I'm most likely spoiled to other techniques. This lady was late, she sat in the same god awful traffic I did. We spent more time going over the woes of her morning, than we did discussing why I was there and what I hoped to achieve through various massage techniques. The massage room wasn't dimly lit, and even as the massage started, lights were still on. I found this odd, but decided to just keep my eyes closed. Then she started ...

I'm Confused As To Why You're Uncomfortable

Full disclosure, I'm well aware that the people I'm talking about, won't be reading this. But this is something that needs to be put out there, on the half chance you might click and read this one post, even though you've never glanced at the rest of them. One month ago, I came to the conclusion that I could no longer work in the capacity I have been used to working. Two weeks ago, I called off for my last week of work, and decided that I 100% needed to put my focus on getting healthy, or at least finding a way to manage my pain. This decision resulted in something no one expected: I medically withdrew from my university. In the weeks that have followed, however, you've bombarded me with your disapproving comments and your blatant lack of understanding. More family won't speak to me. People keep telling me they hope that by being back home, I'll get healthier and I'll be able to go back and finish my degree. I'll be able to take full...