When A Person Screams In Pain

“When a person screams in pain, the actual pain is only half the noise they make. The other half is the terror at being forced to accept that they exist.” ―Noah Cicero

For the better part of this year, this is precisely how I have felt. My pain is getting worse (it is damn near uncontrollable) and I’ve been met with nothing but useless doctors who truly do not deserve their titles. Next month I see a new doctor, and I hope and pray that someone will lead me to the root cause and will start treating me like a human-being who is suffering greatly, and losing an enormous chunk of her life in the process. All I want is someone to treat me properly, instead of giving me the runaround.

If you follow me on social media, my life might seem “normal”. It isn’t. I might have that one day where I was able to walk four miles, and then pay for it with a week or two in bed, with nothing but Cat and Kitten to keep me company, as I desperately try to get the heating pad to be my friend and help ease some of the pain, and it will help temporarily until I pass out from sheer exhaustion. More nights than I care to count, I cannot get comfortable or sleep, because my mind is so overactive, it’s painful. I’ve noticed of late that my mind races when I AM asleep, and the pain leaves me unable to move, speak, or silence my brain. Apparently, my brain is running marathons. 😦 There are days I am crawling because of the pain, and then there’s that one good day, or a good chunk of hours, but it usually results in an insanely early bed-time, which results in my waking up in the early morning hours, in tears from how much pain I am in.

I cry a lot lately. The things so many people take for granted, like restful sleep or a ten minute shower, are things I can’t do. I can sleep if I take the PTSD medication and go to bed within an hour or so, because it drops my blood pressure, but the medication will often wear off in the middle of the night. It only has a two hour half-life within the body, so I’m still trying to hit the right dose. I’ve been able to knock my shower time down from an hour to under thirty minutes, and I turn the water off in between each physical task, but it is often exhausting and draining. Instead of taking four or five hours to get ready, I can now be ready in about two hours, but still, I pay for it the following day. I hurt SO bad, that there are days I just can’t do what I need to, and that destroys me.

So much bothers me, and I’m keeping it all inside. When the heart and soul can’t speak, that’s a whole new level of pain one should never know.

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There Comes A Time When The Pain Of Continuing Exceeds The Pain Of Stopping

“There comes a time when the pain of continuing exceeds the pain of stopping. At that moment, a threshold is crossed. What seemed unthinkable becomes thinkable. Slowly, the realization emerges that the choice to continue what you have been doing is the choice to live in discomfort, and the choice to stop what you have been doing is the choice to breathe deeply and freely again. Once that realization has emerged, you can either honor it or ignore it, but you cannot forget it. What has become known can not become unknown again.” —Gary Zukav

Official?

I finally have documentation on my medical chart that I have Fibromyalgia. What I find odd is that the doctor didn’t check for trigger points or question the discussion, she simply added it to my “history”. If the original doctor who diagnosed me in 2003/2004 had remembered to put it in my chart back then, I’d be dealing with a lot less stress now, but he didn’t. He also said he “did not remember ever having such a conversation”. Of course you don’t; you don’t have my memory and you aren’t the fucking patient! I think we can all safely agree that when a doctor doesn’t do their due diligence, it’s upsetting. From here on in, the words “Please put that in my chart.” are going to be ingrained into my speech at every appointment. All it takes is one idiot, and that’s unacceptable in my eyes.

If he had never said “I firmly believe you have Fibromyalgia.”, after running the gamut of testing and everything came up negative, I might have had to learn about it the way so many other people do; on the Internet. Instead, I walked away relieved, thinking “Thank God I don’t have lupus.” He didn’t explain Fibromyalgia or discuss the progressive nature of it, or I wouldn’t have been so fixated on testing negative for lupus. I had no idea how stupid my thought process was that day. Because in reality, I’d maybe heard of Fibromyalgia in passing, but I had definitely heard first-hand horrors about lupus. In the years that have since passed, we are much more aware of the horrors of Fibromyalgia and precisely how progressive it is, and widespread, as a community of chronic pain sufferers.

I feel a little better that I have a referral for a new neurologist after explaining how I am being ignored by the current “physician” (The man returned my phone calls ONCE. Since then, crickets.), and I use that term loosely. Initially she refused to refer me to someone else when I called and said the appointment was an absolute bust, but in person, hearing about it, she changed her tune. Of course, she also wasted a month and a half of my time because she should have had my back when I said something wasn’t right with the other doctor. I am being sent for x-rays of my cervical and lower lumbar spine, and the doctor said she’ll discuss direction with me when she receives the results. Now if only I could physically move my body… 😦

I talked about how bad the pain was. I’m not 100% certain she took that seriously. My baseline is an eight, which is honestly more like a fifteen for the average pain patient, but when doctors hear that, they react badly, so I stuck with the eight. Now while I am relieved she prescribed muscle relaxers, I was filling out some paperwork very early this morning and noticed a derogatory remark in her notes. It’s highly inappropriate to say to a person’s face (I would NEVER.), so to see it in black and white made me see RED. It genuinely put me back into the whole “I need a new doctor.” position, and I am still on a waiting list to be seen by a different physician in a few months. I firmly feel this is the best course of action. If I don’t like the new doctor, I can always go back to this one, but I feel like it’s important to get a second opinion and, quite possibly, a different perspective. You can only “Uh huh.” me so many times and look at the computer instead of me before I inevitably lose my patience.

Why does a derogatory remark bother me? Because if this was deemed an issue she felt she could put into my notes, but not say to my face as any type of concern, then that is a serious communication issue for me. Moreover, by not talking about it with me, she made an enormous assumption which I know for a fact isn’t true. Please, do not make assumptions about people based on looks, height, weight, skin color, ethnicity, level of education, etc. In other words, DON’T MAKE ASSUMPTIONS AT ALL.

I’ve met Ivy League educated people who were dumber than a box of rocks with twelve piles of shit on top (one was a doctor who’d gone to three different Ivy League schools. Not only was he a moron, but he had all the warmth and compassion of a dead roach. He had zero empathy and cared only about the enormous check he got at the end of each session. He did NOT last long in my world.). I’ve met people with GEDs who made me feel inferior on the intelligence scale, and I’m not stupid, so I try not to judge a book by its cover.

When I see the nurse practitioner in a few weeks, I am going to demand that comment be removed from my chart. It was an assumption, but if it’s not fact, don’t put it in my medical records. Period. I’m a patient, and I want to be taken seriously, but when you write things like that, another doctor might see it and make an error in judgment that I simply don’t deem fair.

When women judge other women without any facts, it pisses me off. I have no right to do it, despite the fact that I am human and occasionally make a snap judgment or a snarky comment (privately). However, I do not know another woman’s story, pain, health, or journey, and taking her down to a tiny square of humanity is wrong. If I don’t want it done to me, then I cannot do it to others. There’s a time and place for joking, but NOT at the doctor’s office.

How sad is it that this reaffirmed my desire to only see male physicians? I’d rather deal with someone who’ll speak up and be real, as opposed to someone who smiles in my face and puts a nasty comment in my medical history. Ladies, you’re not doing the world ANY favors by being rude to female patients. Treat people equally and treat them with respect, or don’t treat them at all. Go into another line of work, but don’t be a bitch. The same way I’ll call out a male doctor for a douche bag comment is not dissimilar to how I’ll tell a female doctor she’s off base. For some reason, men always know precisely how to take what I’m saying and women just get offended that I called them out on their bullshit. In this particular appointment, I probably corrected her half a dozen times, maybe more. I wasn’t there to nitpick or play games, I was there for a serious discussion. Zero compassion, zero empathy, and very little eye contact because she was looking at the computer, not at me. Now while she did appear to be listening, I was the last appointment of the day and got more time than originally scheduled for, but it still wasn’t “enough”.

She said she wanted to follow-up with me “in a few weeks”, but they saw she didn’t have an opening for six weeks. There is NO reason why I should have to wait six weeks to be seen after waiting two and a half months to be seen this time around. It’s disrespectful, not to mention ridiculous. It was her decision to pass me off to the nurse practitioner and while I’m not happy about that, I can only say “Lets see how it goes.” I know a few people who prefer their NP over the doctor, but I still reserve the right to meet with a new doctor when an opening comes up and see how it goes. I deserve better care, period. I was assured that once I am “in” with the new doctor, follow-up appointments are not difficult to get and don’t take months. I need to see for myself, even though she’s further away. And I like the fact that she sees ten new patients a week and does her best to get through the waiting list by doing so. That means something to me. So, I’ll see how it goes when the time comes.

Tonight, I am trying to gear myself up for the x-rays tomorrow. I’m grateful that the hospital can take films 24/7, even on weekends. I hope that by mid-day, my body is loose enough muscle-wise that I can get that taken care of and go on with my day. I have so much to squeeze into this weekend and honestly, the thought fucking exhausts me. If I went back to caffeine, I’d be able to do it without issue, but I don’t know if that’s the healthiest choice to make, so I’m going to play it by ear. Overall, all I can truly do is my best. I’m tired of being told, and shown, that my best is never good enough.

Instead of getting to enjoy my weekends, or brief moments, I have to suck it up and force myself to do things I physically cannot do much any more. If only every day people understood this. 😦

For now, the Fibromyalgia is official. But at what cost? Don’t for a single second think I don’t wonder if I was misdiagnosed and I have something else, because I do. The more I learn, the more I question. As should we all.

copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.