October

This is my favorite season and favorite time of year, but after an emotional, rage-filled moment yesterday, I am questioning EVERYTHING in my life.

To be fair to myself, I reacted via a triggering comment made to me, and new medication that, without my knowing in advance, causes people to occasionally react in a volatile fashion. I’ve stopped the medication, obviously. I don’t ever want to be the type of person who uses her medication as an excuse not to behave properly. That’s unacceptable to me. It’s going to take a week or so to get it fully out of my system, which isn’t a common issue for others, but apparently, for me, it builds up. For most people, it it out of their system within 12-24 hours. I am feeling is gradually leave, but nowhere near fast enough. 😦

I never ask my doctor about trying new medication unless things are bad. This was “new to me” medication, and I should have done extensive research before taking my first capsule. I openly admit to feeling stupid, but relieved that I quickly found the info and said, “I can’t do this anymore.” I had JUST spoken to him yesterday about the drug and was trying to tough it out past the side effects, but that one moment was one moment too many.

When you’re suffering and working solo on your pain/trauma/harm, anything can resurface and cause you to react. That’s what life has been like for me for the past few years, but I haven’t mentioned it. I’ve tried to cope silently, and in turn, I’ve retraumatized myself in several different ways. It is sad and upsetting, and I wish I had the energy to discuss it at length, but I don’t. I feel empty because this is an exhausting process. It’s made worse by no one asking how you’re doing or reaching out to you out of any kind of genuine concern or love for you, which I find SO insulting.

In times like this, I take a huge step back from people. I stop reaching out to them because, quite frankly, enough is enough. The world doesn’t revolve around others who have zero interest in doing the same for you. At the start of quarantine, I reached out to all of my friends to make sure everyone was doing okay, and I let damn near everyone know I was available if they needed to talk. I was mostly ignored. And then, at the end of July, my cousin passed away from terminal lung cancer. I reached out to two of her children, with whom I have solid relationships with, but I know they will call or text if they are having a rough time. They have their support systems. I do not.

I don’t speak to 96% of my blood relatives, and I have my reasons. If you have to find out that your Aunt passed away by finding her obituary online (after not being able to reach her by phone), that is a testament to how your cousins actually feel about you. My father’s side of the family baffles me. My mother’s side isn’t much better, but at least a few people value me enough to maintain a relationship of some kind. One of my cousins is sending me distantly related cousins via Facebook because she uploaded her DNA onto 23andMe and located people this way. If I wanted to upload my DNA to find family, I would do it myself. The truth is, I have enough distant relatives to last a lifetime and no deep-seeded need to “connect” with people I don’t know at this stage in my life. Especially with people in their 70s, 80s, 90s, etc. Let them live and be well, but I would much prefer a few peers. I don’t want conversations about who died, and when. Hard pass.

So yeah, I am struggling. I am suffering. I’m in a dark place. I am usually on a telehealth appointment once a week with my doctor, and despite writing and doing research for various projects I have in the works, I feel like I am mostly achieving nothing at all.

I am either asleep or not sleeping at all. I am in a lot of pain, so I have extremely limited what I do and where I go. After getting sick last month for a while (and having my symptoms suddenly disappear), I wonder if I need to be tested for Covid. It’s hard to tell if my cough is “just allergies”. I might have a minor cold, but it’s the feverish feeling with no fever and insane chills, that make me worry. Yes, this could be a major Fibromyalgia flare-up, or something valid. Unfortunately, when I did call my doctor’s office about this, they weren’t the least bit concerned. The fact that a persistent cough makes me feel like there’s eucalyptus living inside my chest was of zero concern to them, but they thought they were doing me a favor by letting me know I could go and get tested, and they’d fax a request in wherever I decided to go. Instead, I called a local Urgent Care and they said, “Just come in. We don’t need a note or prescription from your doctor, and it’s covered by your insurance.” There’s also free testing being done in the area, so I’m covered if I do need to go. My insurance has called, texted, and sent letters to let me know any testing or treatment will be 100% covered. If I go, I will verify it over the phone, just to be on the safe side of potentially receiving an astronomical bill.

As it begins to dip into the 40s and 50s here, my entire body feels like someone poured -30 degree blood into my veins. Even if it’s 70 degrees outside, I am bundled up like it’s about to snow. I can’t seem to shake the chill. And yet, this could just be my new normal. 😦 I will not know until Spring, pretty much.

Here’s hoping some of this lifts for me and I am able to enjoy the Fall version of October. Realistically, I’m not holding my breath.

copyright © 2020 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.

A Woman With Lupus Said Her Health Care Provider Is Stopping Her Chloroquine Prescription And Thanked Her For The “Sacrifice”

https://www.buzzfeednews.com/article/tanyachen/kaiser-permanente-lupus-chloroquine

This angers me so much. Millions of pills were donated by Teva Pharmaceuticals as part of a potential way to eliminate coronavirus, but I will refuse to take it, if medically necessary, because I will NOT have others stripped of their life-saving medication. It was already done to me, and I can’t stand by and accept this. I will be reaching out to Teva to see if they can help people directly.

We thank soldiers for their service. We do NOT sacrifice patients who are already ill. If you’re so inclined, please contact your health insurance companies and pharmacies and make sure they are not party to this, as well. 

The Pharmaceutical Industry

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I say this as someone who has had to fight for mediation many times, and as the sister of someone who was put on an $8000 a month drug that the insurance refused to cover. Today, they finally approved a much-needed drug for my brother’s life. He will, hopefully, be released from the hospital tomorrow. They hospital refused to discharge him until the pharmacy could assure them the medication would be ready, Fingers crossed this helps his quality of life. He nearly died last week. 😦

I Heard…

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This quote is basically my new norm. I had to make a serious decision this year regarding my health, and ultimately I had to choose to make my health my first priority. There was no one to consult with on that. No one was going to prioritize it if I didn’t do it myself; a basic fact. 

Here I am at the end of November, still focused solely on my health, and a list of goals I’d like to achieve sooner rather than later. I am determined, but I’m also exhausted, sleep-deprived, in serious pain, and trying to be strong through all of it. I am currently on a steroid taper for a skull-flaming migraine. I barely know my own name after the past 48 hours, so bear with me. 

I see my stats and I know I am writing less here. Well, I’m posting less, but please know I am still writing. I’ve got multiple posts in the pipeline (one needs fine-tuning before it goes live). My time has predominantly been spent going to and from the hospital, to testing, to doctor’s appointments, and I’ve had two in-office procedures done this year where my migraines are concerned. The next one is in ten days, except now I know some of what to expect from it. No, I am not taking a CGRP drug and for the foreseeable future, it’s not on the table as something I would personally consider, nor has my doctor mentioned it as something she’d be willing to prescribe.

I’m grateful for the handful or so of good people and their AMAZING office staff, who have been incredible to me this year. From May to present, I have been deeply blessed with the people who’ve been taking care of me, who’ve listened to me, those who are my treating physicians and are proactive about it. We live in a current medical climate where doctors often behave in such a superior manner that you contemplate kicking them, just to see if they’re human. I REALLY lucked out with two of my physicians. I have a lot of respect for down-to-earth doctors who treat me like a peer and/or treat me with the respect I deserve as the sufferer. Not everyone can master this, but two of them have, and it makes me feel like there’s a real team behind me for certain things. When your doctors actually encourage communication and they always make sure their staff is being good to you as well, it’s a nice feeling.

For all of the medical issues I endure, writing has been a constant in my life at all times. I don’t stop thinking, speaking, believing, or writing the truth; not ever. I can step into fictitious worlds I’ve developed when I want to, but for the most part, I’m going to live in the truth and keep that steady.

I will be featuring more medical pieces going forward, but I will still share other views, as well. I’m not changing as a person (I’m growing. There’s a difference.), but I am thinking more about the overall message I want my readers to receive.

In short, I am wishing you all a fabulous, healthy, happy, safe holiday season. I’ll be back with some good talking points ASAP.

li      

One Of The Things That Baffles Me…

“One of the things that baffles me (and there are quite a few) is how there can be so much lingering stigma with regards to mental illness, specifically bipolar disorder. In my opinion, living with manic depression takes a tremendous amount of balls. Not unlike a tour of Afghanistan (though the bombs and bullets, in this case, come from the inside). At times, being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of. They should issue medals along with the steady stream of medication.”
Carrie Fisher

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.