10 Tips For The Days You’re In A Lot Of Pain

https://themighty.com/2017/05/tips-what-to-do-chronic-pain/

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Questioning Everything

Hello everyone. 🙂 I’ve been both present and not-so present around here for quite some time, mostly from an emotional standpoint. I’m not going to apologize for that. No one should ever apologize for taking care of themselves, or the crap in their lives. If someone tells you their life is perfect, I’ve got a bridge to sell them in at least two states. 😦

My x-rays came back and showed nothing. That was two and a half weeks ago, and my doctor never deigned to get back to me. In fact, she idiotically had an assistant tell me my spine is “perfect” (If that was true, I would NOT be in excruciating pain every day of my life.) and to “keep taking the muscle relaxers” and “do yoga”. I REALLY didn’t appreciate the “do yoga” comment. This isn’t a pulled muscle or a stretching issue, not by a long shot. I told the assistant “Where did the damage to my spine go? It did not miraculously heal itself because IT WAS INOPERABLE.” Her response? “I’ll tell the doctor you’re not happy with the results.” Click. ARE YOU FUCKING KIDDING ME?! One, I never said that. Two, I stated that I wanted to find the root cause of the pain so it could be properly treated. If you’re going to “assist”, at least get your shit together. 😦 Picture the angriest face in the world, because that’s how I’ve looked at times dealing with this crap! 

I called the office today and left a message for the nurse practitioner to get the ball rolling on the MRI. They need 24-48 hours to hear back from my insurance company because apparently, doctors used to abuse the privilege of running tests and now need to run such things past the insurance. Angry, annoyed face makes her appearance.

I had an appointment scheduled with her for tomorrow afternoon, but decided to cancel. I’d rather talk with her, ask for the MRI to be pushed through, and reschedule once the results come in. It’s pointless to go in and rehash my issues with someone new, especially considering the amount of pain I am in. Just showering and get dressed is terribly painful, especially when I can’t bend down. I wake up in so much pain each day, I simply cannot commit to anything at the moment. I cannot drag myself in to the office when I can barely drag myself from one room to the next. Yes, it’s less than five minutes away, but just the thought of going in for another chat is a waste of time in my eyes. Especially since I see how much they’ve been billing my insurance company each time, and how much the insurance actually pays out. Let’s sum it up in one word, LUDICROUS. I should start sending bills to my friends/family when they call for advice!

I hate admitting this, but fighting through all of the day-to-day pain, and some extremely upsetting things I have learned over the past few weeks, has made me want to cancel the rest of the year, pretty much. There is a deep, dark cloud of depression hanging over everything. I hope & pray it all works itself out, that the impossible will soon be possible, and that changes will start working towards positivity. I hate the way I feel and when I feel this way, sharing my thoughts isn’t always wise.

I saw the new therapist last week. For now, I’ll go in once a month. Not because I feel I need it, but because it’s good to have someone in place in case I DO need it. There are some painful things coming up in my life, and in the lives of those close to me, and I might need a neutral third-party to help me get through it. I don’t love her, but I don’t hate her. I think she’s fair and I appreciate that she likes my direct approach and honesty. My doctor, apparently, said a lot of wonderful things about me to her before he left. He told her I deserved someone amazing. That means more to me than a lot of things he could have said. When someone’s perception of you is incredibly kind and positive, it’s nice to get that feedback. I am sure plenty of people don’t have the same insight into me as a person, and that’s fine, but anyone I work closely with who gets it has the opportunity to either see that in me or they can choose to see something else. That’s on them. I’ve got a hard enough time dealing with my own personal stake in who I am.

I’m writing. I am researching extensively, and trying to flesh out my characters to give them more depth. As solid as the story is, and it’s so good I can’t believe I wrote it, I know the characters need more substance. You want to get deeply enmeshed in their lives from the first chapter on, and you want to root for them. It’s already there, but going deeper is important because otherwise, I will certainly be told that the characters need more trials and tribulations. I do read-throughs on it and always think “This needs something MORE.” Being tired, in pain, worn out, and often-times triggered by the smallest things, have made me feel like I needed a break from the writing. I started research for a new project the other day. I’ve never written a crime mystery, but I’m contemplating it. Why not? It’s personally uncharted territory.

I have been managing a pain support group for well over a year now. A few days ago a member approached me to start a petition for 100,000 signatures to go in front of the President. She offered to help, as did her husband. Is it terrible that I wanted to say “Do it yourself; I’ll sign it and help you promote it.”? This is a small group of people and they only come to me with ideas that are enormous undertakings. Whenever I present something small, they ignore me. All of them. I understand that many of them assume I am a pain advocate, but the truth is, I am a patient who is struggling and can’t even fathom getting 100,000 signatures. Do I for one single second feel the current “President” gives a shit? NO. He’s trying to revoke the current status and privileges of roughly 800,000 people by what he’s done with DACA, so why the hell would he care about pain patients?! If he were a reasonable person of sound mind, I’d feel more confident that what I say will be heard. However, he’s not a reasonable person and he’s proven he’s not sane, so this feels like a fight I don’t feel I can take on. And yet, I said I’d do it. Mostly to see if it can be achieved. I don’t have any expectations.

I hope everyone had a happy, safe, fun summer. I hope you enjoy the remainder of it because Fall is definitely on its way. For the first time in a long time, I’m not excited about it, or anything, really. Each day of my life is so monotonous, I can’t bear waking up each morning. Here’s hoping that changes.

Wishing you all a peaceful and safe Full Moon.

Lisa-blue

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

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.