Uncharted Waters


“Life is uncharted territory. It reveals its story one moment at a time.
~ Leo Buscaglia”

The man sat on the end of his bed; in one hand, he held a revolver, and in the other hand, the bullets to put in the gun. He was having yet another horrific migraine attack, feeling that this would never end, he decided the only way to escape the pain, was through death. But before he could place the bullets in the chamber, they slipped out of his hand, dropping and rolling away from him. The sound of each bullet hitting the floor assaulted his ears and brain, all he could do was curl up in agony. He didn’t have the strength to find the bullets and complete what he had started to do.

I read this man’s accounting of this story many years ago when my migraine disease change from episodic to chronic. It was so poignant that it has remained with me all these years. I cannot stress enough that migraine disease is more than a headache, a headache does not drive one to want or sadly, take their own lives.

Due to the coronavirus, many of us living with migraine disease feel like we are in uncharted waters, as far as our healthcare is concerned. I know that I do. Please don’t lose hope, as things have been since the beginning of time, our civilization has overcome many different sicknesses. Polio, Bubonic Plague, Small Pox, and a few more, and we will make it through coronavirus as well.

Uncharted waters for me was feeling guilty or selfish about; my level of pain from both intractable migraine disease and fibromyalgia flares, when there are people dying from the coronavirus. The more I thought about it, I realized that I wasn’t selfish, because I wasn’t taking anything away from the treatment of those who are ill with the virus. I just need help from my headache specialist, but I’m having a very hard time getting that. Some of this is due to the clinic being closed, and the doctors not seeing patients. But the nurses are there handling emails and calls, with the doctors available to answer patient’s questions and concerns. I’m simply not getting any answers to my question.

My head pain level from the intractable migraine has not been below a seven since March fifth, and not below 8-9 since March twenty-seventh. Unfortunately, my fibromyalgia pain stays pretty much on the same level. To bring some perspective, I was discharged from the hospital on February twenty-ninth, after a six-day admission. An admission that was a total waste of time, since the Inpatient Attending Physician, basically threw out my usual treatment plan. Refusing to order the IV Steriods that I’ve been getting for a year and a half. DHE infusions do not work on its own anymore, adding the IV Steriods does the trick.

In less than a week, on March fifth, I was right back where I started from, only worse. I’ve developed an awful case of alloydonia on my scalp, that it is so painful that brushing my hair brings me to tears. It is also affecting the parts of my body where fibromyalgia is the most troublesome, giving my IM injections are extremely painful, this has never happened before. I can only wear the softest clothing against my body. And I’m getting Ice Pick Headache at least twice a week, I usually only get them three to five times a year.

The only response that I’ve gotten so far from my doctor is, “Sorry, but in our system, the inpatient attending is always in charge.” Well, I’m sorry too, because that is just not good enough. Their system is flawed, and who paid for that flaw? I did, and I continue to pay for it. The only way I can escape the pain is to sleep, what a life(rolling my eyes)! I told my doctor in an email,(that’s the only form of communication)that I am not living, I’m just existing. Who wants to live like that?

I refuse to let this matter drop, the Inpatient Attending was wrong, he refused to listen to me when I explained, that this medication was useful to me. He did NOT give me the best possible care. On top of that, he knew little if anything about headache medicine. I’ve given the clinic, the doctor, and the supervisor more than enough time to address this issue with me personally. And they have done nothing. Now I’m forced to write to both of the heads of the Neurology Clinic.

I’m tired of people living with migraine disease, being walked on like a doormat. We matter, our voice matters, migraine matters, our pain matters, we will no longer sit demurely in a corner, hiding our pain, those days are over! We are entitled to the best doctors, the best treatments, the best medications, and to be treated with respect and dignity. Not belittled and stigmatized by healthcare specialists when let’s face it, most of the time we know more about our migraine disease than they do. Because we make it our mission to know as much about the disease we live with, as we can possibly do!

“No thief, however skillful, can rob one of knowledge, and that is why knowledge is the best and safest treasure to acquire.”
L. Frank Baum


2 thoughts on “Uncharted Waters

  1. I so admire how you can take action even with your pain level. I know that part of that is driven by the arrogant attending who didn’t listen to your request. I understand how you can empathize with those who decide to check out, opt out, and end the pain. It’s so frustrating that we still don’t have the medications to control this disease for all that suffer from it.

    I hope that you can try some of the new medications coming out. I know that Medicare won’t let you use copayment cards which I find absolutely ridiculous.

    Keep sharing with us what your journey is like. I appreciate your honesty about how hard multiple diseases can be.

    Always here for you. Love, Mel


  2. Mel ~ I’m happy to see that the comment section is working properly this time around. Word Press had done some changes and I had to figure out how to fix the comments section. Phew!!

    Thank you ever so much for your neverending support and encouragement, it means the world to me. 💜

    I hadn’t blog since last September and it was high time to get back in the saddle again. Taking a break from social media as given me time to bring my ideas for a couple of blogs to fruition.

    Much love,

    Liked by 1 person

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.