The Never-ending Nightmare

beinginpain
After two conversations with my doctor’s office in the past two days, I finally put my foot down and demanded a referral to a Rheumatologist. I feel like I’M the doctor, because it’s been three weeks and they still haven’t managed to acquire my records from other physicians. I was told to reach out to them… I did not realize it was part of ,my job description. I’m fed up and I’m tired of being told my neck/back/spine is “just a muscle thing”. No, it isn’t. I’m many things, but dumb isn’t one of them. So yeah, it’s been a frustrating week, to say the least. 

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.

What A Pain Level Of Ten Feels Like

https://themighty.com/2017/08/what-pain-level-10-feels-like/

I went to the doctor today and disclosed my diagnosis. Instead of reacting as I expected, she is sending me for a test before she decides how to proceed (ie: Where to refer me next.). When I said “My baseline pain every day is about an eight.”, maybe she thought I was being melodramatic, but honestly, my eight is probably a fifteen for most people. We’re all different. I just known how bad an eight can be daily, with zero relief, and I don’t think anyone should take someone’s pain levels lightly.

For now, the only thing she felt comfortable prescribing were muscle relaxers. Since I have been on this particular medicine before, I am sadly excited to go back on them because, in the past, it meant sleeping with a lot less pain. It meant lifting things didn’t hurt the following day as much as a roll of paper towel hurts today. It gave me a tiny portion of my life back, but she completely lost me when she started talking about “spinal injections”. When doctors bring up things that others have said no to, it makes me question whether or not we should practice on them first. 😦

Life, On Hold

I guess late Friday night has become my new “time to write”. I have no idea when that became a thing, but let’s roll with it, shall we?

My big accomplishment this week was talking to my insurance company and getting an emergency reinstatement, all thanks to someone who knew what she was doing and was the kindest person one could hope to speak with. The best part was, as she was helping me, saying “I don’t know why they needed address confirmation. You already confirmed it twice. And I’m not seeing where they sent you a letter, but apparently they wanted confirmation by June 13th. This makes no sense.” She then told me to call back Wednesday morning. After four hours of not being able to get through to anyone (I love being on hold for an hour and then being hung up on. T speak to a person once this week, it was a six-hour wait on hold, in total, and constantly calling back whenever I was hung up on.), I finally got confirmation through the automated system that I’m “active”. Yay! The downside is that I still have to call again to see if they will reactivate the “child company” before September 1st (I spoke with them, they told me their system might update next week, but there are no guarantees.). It’s still early in the month and there’s no legitimate reason I should have an issue. However, this does mean canceling the neuro follow-up without the “child company” to pay for it, which, lets face it, I had no belief in, any way. When a doctor is out of the room before you’ve finished speaking, it’s not a good sign for things to come. He still hasn’t called me back, still hasn’t squared away medicine or ANYTHING requiring prior authorization, and I don’t see the point in going in without knowing I’m covered for the visit and two, to discuss what? Would he even listen to me? That’s a twenty-minute waste of my time and I simply don’t have the patience for it this month. I’ll reschedule, and maybe between now and then, he can figure out how to get his shit together before I write a scathing review.

I rescheduled one of the appointments I wasn’t able to get into last Friday, but the person who scheduled it informed me I would require the doctor to “discharge me as her patient” in order to see someone else. I listened to the message and “Are you fucking kidding me?” is all I had to offer. I’m a PATIENT, not cattle, not a piece of property “owned” by the overlord. I feel like it would be hypocritical to see this doctor for thirty minutes and then say “Can you discharge me to another physician because, after the way you treated me when we first met, I cannot in good faith work with you moving forward.” Doing so could cut me off from much-needed medication, and I am already angry that she put me in a compromising position with my current primary care doctor, who surprisingly came through for me. And if you’re going to practice what you preach, it is hypocritical to sit with someone you already know isn’t going to work out, merely to get a month’s worth of medication. Plus, how long would I have to wait to see someone new? The whole thing stresses me out and makes me ill. These are things I will have to bring up at my appointment next week, which is also stressing me out.

Every aspect of my life is on hold. Finishing up online classes for a certification? On hold. Starting new classes for a new certification so I can begin a career I actually want to work in? On hold. Being able to get up each morning with zero pain? Probably never going to happen. The issue with suffering from any form of chronic pain is that, if you sign a pain contract, you can be tossed from any doctor’s office if, for example, you decide to use Kratom or CBD oil as an alternative because they might look for it in a drug test. The pain I am in is so bad, all I want to do is go to the emergency room and scream until someone helps me. However, no one wants that put into their chart as “drug-seeking behavior”. I’ve never “sought drugs” in my entire life. The only addiction I’ve ever had in my life was to Polar Seltzer. I’m drinking my first bottle in months because I went off of medication based on sheer forgetfulness. In case you’re wondering, Toasted Coconut is as good as it sounds. 😉

I’m having trouble sleeping soundly. I’ve had a migraine every single day this month, and only had two migraine-free days all of last month. I’m hurting, stressed, frustrated, and fed up. I’d like to sleep soundly, wake up pain-free, and not have to struggle to push myself physically. I was hurting so bad last Sunday, I nearly passed out in public, but not before a woman who has never met me before stopped me at the grocery store to inform me I “look kinda pale”. I went into the stores’ restroom and took a look at my face. Nope, pale is my natural skin-tone. If you don’t know me and have no clue what I look like on any given day, it’s incredibly rude to approach a stranger and say “You look kinda pale.” I turned around and said “Are you being cute?” I was annoyed. It wasn’t the concern of someone stating I didn’t look well, it was something else, and quite frankly, combined with my eye makeup, I wouldn’t have approach ed me at all. The colors I’d used sort of made me look like a vampire. I didn’t notice it until after the fact and once I’ve finished with something like that, I am not taking it off and starting over.

I’m having terrible difficulties writing the things I want to write. After months of research and trying to get the ball rolling with an article revolving around chronic pain patients and the reduction of medicine we’re experiencing as a whole, I’ve had to focus more on my own health than I would normally be able to focus on a body of work. And since then, plenty of people have come forward and written things from their own perspectives. It sort of makes me wonder if I should bother at all, which bugs me, because I don’t like starting something I’ll never finish. It makes me feel like a fuck-up.

Yeah, I’m hard on myself. What might normally work for others in terms of decompressing only manages to stress me out more. I hate hearing these terms “breathing exercises” and “mindfulness”. It’s reached a point where I will throw something hard at you if you mention either. I cannot breathe past the pain I am in, so please spare me the nonsense. I’m plenty mindful, yet apparently not mindful enough for people who preach about it. And yeah, I lack the ability to “go with the flow” because the “flow” is monotonous and makes me want to walk in front of a truck.

No one wants to “exist” and wonder what their purpose is. People keep turning to me with “pain advocate” or “pain activist” issues and here’s the thing; I am having a hard enough time advocating for myself. For someone who has been told I am “always incredibly articulate”, I feel like an absolute moron trying to explain how badly I am suffering and how all I want is relief. I imagine this is what happens when your body is experiencing too much pain on a daily basis with no break. I have NEVER outright said to any doctor “Give me pain meds.” Never, and yet I feel distraught at the thought of being forced into a pain contract or worse, having a year-long (possibly longer) wait to get into any form of pain management. Pain management in Massachusetts is everything BUT pain medication. They will even prioritize surgery over managing your pain. If you will willingly implant a pain pump into my body, but are afraid to give me real medication in that pump, then there is no valid reason for me to put myself through surgery. I’ve never had surgery in my life. I still have both of my wisdom teeth, mostly because I’m stubborn. I know they will likely have to come out by the end of this year, and I’m kind of okay with that, but that is far less invasive than something being implanted into my body that may, or may not, work. See how stressful it all becomes when you think about it?

This is, by no means, the life I signed up for. I had dreams, goals, and things I wanted to achieve. And yet, as I sit here, my entire fucking life is on hold. I, for one, hate it.

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