https://themighty.com/2017/08/effects-of-solar-eclipse-on-someone-with-fibromyalgia-chronic-pain/
Fibromyalgia
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.
Childhood Trauma and Stress Leads to Fibromyalgia
https://www.ushealthtimes.com/childhood-trauma-and-stress-leads-to-fibromyalgia-dr-brady/
That’s not all it can lead to. 😦
It’s Possible To Feel Worse
Just when I thought it wasn’t possible to feel any worse than I have these last few weeks, I woke up this morning and the pain is at an all-time new high for INSANITY.
You know those pain scales every doctor’s office has posted with idiotic faces? There is no logical way to say “Oh, I’m at an eight.” when in fact you’re at a fifty for your own personal pain threshold. We’re all drastically different. What I do on days when my pain is at a ten are things that would kill the everyday, average person. The pain scale is one of the most inaccurate things I’ve ever witnessed in life. It’s also unfair to those who suffer daily. It tells you that a ten is “The worst pain you’ve ever experienced in life”. That’s most days for me, it’s not “on occasion”. A five or six would be my every day baseline according to that chart, but as I stated, it is inaccurate. I have no choice but to function at 50-85% pain every day of my life. Give me a chart for that! 😦
There are pains we’re warned about in life, at least as women. Menstrual cramps, childbirth, toothaches, ear infections, sinus pain & pressure, a burst appendix, gallbladder pain, post-surgical pain, broken bones, etc., but nothing in life quite prepares you for a searing migraine that will not go away OR the physical body pain that has decided to accompany it, courtesy of Fibromyalgia. My arms, legs, every muscle, joint, tendon, and perhaps things I may have missed are on fire. This comes from a ravishing creature who sat through four tattoos and didn’t bat an eyelash. That felt GOOD compared to what I am currently experiencing, and yes, I paid for that “luxury”.
My main task yesterday was showering, getting dressed, and getting my butt to Urgent Care. This sounds SO easy. Have you ever tried showering when half of your body doesn’t want to move or work properly? It makes it a very tedious task, indeed. I pushed through though, after a short nap (When you’re an adult who needs naps, it’s not the kindergarten kind of nap one dreams of. It’s the nap where you’re desperately trying to rest and your cell phone genuinely needs to be tossed out a window, except you need the damn alarm on it, on the off-chance you over-sleep.). I had reserved a time slot on their website on Thursday, and that had been a very smart idea because when I arrived, they took me quickly.
So, how do I feel today? STUPID. I will never go to Urgent Care again for a migraine. I asked them in advance if they handled severe migraines and they said yes, but this is clearly more suited to the emergency room. It’s technically NOT an emergency, but it IS when you need access to the medications an ER can provide that a walk-in clinic doesn’t have on hand. Sad, but true.
I was treated perfectly fine, they were very caring and kind, but after I got home, the anti-nausea meds I’d been given in the IV, along with Toradol, proved they were not only ineffective, but I am clearly allergic to one or both of them. I took a second dose of the anti-nausea medicine (normally given only to cancer patients) before bed and I am paying for it this morning. I’m nauseous AND my stomach is on fire, which makes me wonder if my ulcer has returned. I had one years ago and it took a long time before it healed (I was warned that with too much stress, it would return) and I could stop taking medicine for it, but that is pain you NEVER forget when you’ve live with it for years on end.
I have had ZERO pain relief. This means calling my doctor on Monday and making an appointment because I can’t get through a month of this until I see my new neurologist. If it is indeed my ulcer, I can go back on probiotics or OTC Nexium until I can see someone, but it is CRAZY to suffer like this.
The worst part in all of this is that I do NOT want to get out of bed. Technically, I already am (Kitten was crazy aggressive this morning because I was late getting home to feed them. She thought breakfast time was the second my head lifted off the pillow!), but my point is, I want quality rest, not six fitful hours of torture vaguely masked as “sleep”. And for the past few days, more than once, I have wondered how much stress factors into how I am currently feeling and what I am going through.
Stress can cause so much damage, and oftentimes, we don’t consider it as a factor in our health issues. I can’t remember which doctor asked if I was under a lot of stress (I believe it was my neurologist, though. It was a long time ago.), but I do remember saying “YES!” His answer was “You need a vacation.” Gee, why didn’t I think of that?! <rolls eyes>
Wouldn’t we ALL love to go away and completely detox from the stress of our lives (Relax, I didn’t say we all had to go together!)? Yes, most of us would. Anyone who says they have zero stress in their life is lying, or a delusional billionaire.
Pain should not make you feel like you’re being eaten alive by a Komodo dragon, but sometimes, that’s exactly what you feel like. I wish I could say I was being dramatic. If anything, I’m downplaying it. 😦
The best part of my Urgent Care visit was the doctor saying he doesn’t think I suffer from migraines. Excuse me?! Every highly educated neurologist I’ve ever seen has declared that I do indeed suffer from migraines, but you think it’s “just tension“?! My blood pressure was through the roof; that’s not tension, that’s PAIN. Mind you, a smarter doctor would have seen fit to provide me with muscle relaxers if he thought it was “just tension“. My neck is indeed tight and sore, not to mention achy as hell, but it’s dealing with a lot and I chose not to disclose my spinal damage to him since it’s already in bold-type in my chart. A chart he couldn’t seem to read since he repeatedly asked me the same questions over and over again.
I’ve learned my lesson. Urgent Care isn’t suited to migraines. Unfortunately, a busy emergency room isn’t much help either, but if ever I am in this position again, that’s where I’m going. Under duress.
To add insult to injury, the pain medicine he prescribed couldn’t touch any of this with a ten foot pole. I took one last night in the hopes it would help, but it didn’t touch the migraine (it helped everything else temporarily). Even better, he claimed on the prescription that I asked for half the normal dose, which I did NOT. No sane pain patient would ask you to give them less pain medicine for the same price. That’s over 50 cents per pill for a medication that doesn’t even cost 10 cents to make. My insurance company should be shot for charging me full price.
I honestly just want to lie here and moan. 😦 But mostly, I am praying this horrible nausea goes away. Obviously, today is one of those days where you have no choice but to stay in bed and rest. Bleh! I hate days like this.
Wishing you all a stress-free, no-pain weekend. I hope someone had good Mexican food for me yesterday. As bad as I feel, I would murder someone for a taco!
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
To Those Who Tell Me To ‘Smile!’ On My Bad Pain Days
https://themighty.com/2017/04/why-not-to-say-smile-pain-fibromyalgia-rheumatoid-arthritis/
I completely agree with this article.
Fibromyalgia and Hip Flexor Pain
http://www.living-smarter-with-fibromyalgia.com/fibromyalgia-and-hip-flexor.html
This is the story of my life, partially. Despite being crazy flexible, I live with excruciating pain in both hip flexors. When it flares up, it’s awful. When it’s fine, I’m okay, but it’s the kind of pain you NEVER forget. I’ve lived with it since I was a gymnast and I still have it. 😦 C’est la vie.
Doubting Myself
All writers have moments when they feel unprepared. Me? On occasion I will say “I wish I were talented.” or “I can’t write this.” In other words, even the best of us have bad days. Or weeks. We all have a little doubt, or we’d be completely full of crap.
I hold it in really well, but I have a lot of doubt when it comes to material I haven’t been writing since day one.
When I first began writing, I did toy around with some fiction. I spent about four or five years writing it for FUN, and when I moved from one state to another, I trashed every single printed page and everything I’d saved it to. Why? Because I took a look at it, saw my growth, and realized that even though it had been fun, it was infantile compared to what I truly wanted to be writing. I didn’t ever want to come across it again because it was nonsense. I decided then that it was okay to read fiction, but it wasn’t in my best interests to be writing it. I did not personally excel in made-up worlds.
Fast-forward and I’ve since created a Dark Urban Fantasy series, which I will be refocusing on at some point in the future (Meaning not today, but soon.), and I am currently working on something I’m not completely comfortable with. However, it is allowing me to explore my emotional depth, and maybe that’s the entire point. Maybe that’s why this story haunted me for months. Maybe it is a reminder that I’m human, and that not every part of me has to be put into storage under lock and key. There are certain lines in the book that are straight out of my own life.
More than once I’ve caught myself saying “Do I have to publish it under my name?” Yes. Yes, I do. I cannot worry about the thoughts of others. I can only tell the story, and move forward. There will be good reviews, bad reviews, and middle of the road reviews. I’m used to that, because not everyone likes my writing style and plenty of people like me even less. Regardless of what people think or say, I still have to tell the story.
For the last few days, I took it upon myself to do some research. I read a lot to see if anyone had anything similar out there, as a precautionary measure. Even if I didn’t know about it, someone could still accuse me of a form of plagiarism. My determination after a few books is that after a certain point, a lot of stories start to blend into one another. Everyone tells their stories a little differently. Some are good, some aren’t, but ultimately I need to stop worrying. Comparing and contrasting isn’t my job. Writing IS.
And so I sit here today, as per usual, with a lower back and left shoulder that are in desperate need of medical treatment. Just walking yesterday killed me, and by walking I mean 3 ½ miles worth. I have no idea how I’m functioning today.
No, I’m not being stubborn. The insurance I had doesn’t cover the doctor I want to see, who is local, so I switched temporarily, just to be able to get in with ONE doctor until I can find someone to see me on the other plan. They told me it wouldn’t go into effect until May 1st, but that I am still covered regardless and not to worry. However, when I went to pick up my medication yesterday, I was already covered by the new plan. I stared at the pharmacy tech and she said “They’re SUCH liars. You can speak to five different people in a day and they’ll all tell you a different story. This happens every day, all day long with these people.” It isn’t the first time I’ve thought that in regard to this company, she just got it out of her mouth before I said something equally as honest.
Technically, I should be at Urgent Care instead of sitting here writing. Alas, this might be another one of those weeks where I don’t get to prioritize my health because of outside circumstances beyond my control. The doctor can’t see me until the end of the month/early May, so Urgent Care seemed like a step in the right direction. Unfortunately, they have bankers hours and I don’t want to show up only to be told they don’t take my insurance. I’d probably lose it on someone. As it is, I have until June 29th to change my insurance AGAIN and then start over with a whole new set of doctors that will be G-d only knows where! What’s the point of having health insurance when no one is accepting new patients OR they’re so far away, it’s utterly pointless?! It’s extremely frustrating to me.
And so, I write. I write through the pain, I try to write it out of my system emotionally, and I desperately try not to sit here in tears when the pain is too much (which is 99% of the time).
There are days I’d like my original life back. One where very few doubts entered my mind, and where being able to walk, sit, stand, think, etc., were not issues because my life wasn’t chock full of agonizing pain.
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

