Forks In The Road

Welcome to all the new readers, and those who’ve been with me for years or months. 🙂 I’m happy to greet you all.

I’ve been working on a piece about racism and my personal experiences with different forms of it, but mostly, I have started to notice just how worn out I am, which lends to me feeling completely useless. I am not sleeping well; and I am trying not to rely on prescription sleep medication because it either doesn’t work or it leaves me with sleep paralysis. I am burnt out, stressed about life and the future, thinking about all of my relationships, etc. I’ve been trying to allow myself the honesty of all of my feelings privately, which hasn’t been helpful, though perhaps I am too close to say if it’s helping or not. I do know there are abysmal highs and lows these days.

I will be taking some brief breaks for the next month or so. I don’t know if they will be obvious or not, but I think it’s necessary and needed. I think it’s time to get my head into some sense of normalcy and keep pushing for betterment. I hope you will all understand the reasoning. I will still be present, but there will be days when I’m not. I hope it’ll be fine, no matter what.

For the month of March, I will be focusing on a few charities in support of Colorectal Cancer and Women’s History Month. I also have my Goddaughter’s tenth birthday approaching. People always say, “You’re way too young to be a Godmother.” I don’t think they understand what an honor it is to be asked to be a part of a child’s life in such a deeply personal way. There is no age requirement or limit involved. It’s an honor and a privilege, and yes, it is also a responsibility. It says something about me, as a person, that people fully trust me with their child.

I will do my best not to be too “out of it” here, but will also do my best to rally. For now, though, this picture near a local trail says it all. I’m walking towards the color, because everything else feels too harming and bleak.

Wishing you all a peaceful week. Bright Blessings.

I’ve Built…

It has always been important to me to be transparent about my shortcomings and the strengths. I don’t try to pretty anything up. Too often, people pretend their lives are so perfect online, with perfectly posed, edited photos, but you never see the truth of what goes on behind closed doors because all they care about is the imagery. That’s not what attracts me to people or to their work. Honesty and humor attract me. Real humor; the kind that isn’t forced, that isn’t passive aggressive, the kind that is wholly natural. It takes a lot to make me laugh. In the past week or so, I’ve maybe laughed four times. Each time, my cats came to see what was going on. “Is she having a stroke? Should we get help?”, they probably wondered. Of late, laughter hasn’t exactly flowed.

As an extremely private person, I still know that being forthcoming about my suffering (From A to Z) has helped others get help, come out of their shells, talk, trust again… I know this because they have e-mailed, messaged, and shared these facts with me, even if it took them a few years to say anything. I didn’t know my voice would help people, but it has and it will continue to do so, because I know the power of using your voice for change.

Wishing you all a safe, warm, stress-free weekend.

P.S. I will be listing charities ASAP who are helping out with the crisis in Texas. Every penny helps. It took our government way too long to respond to the need for help, and our own people were forced to endure this without an immediate helping hand. It’s disgusting beyond words. It’s Puerto Rico and Hurricane Katrina all over again, and it is NOT acceptable.

I know people who are 6-7 days without power and who have no clean water. Power is being restored slowly, and many are afraid of what will happen when they return to their homes. Will the pipes have burst (A much more common occurrence in colder climates.)? Will they be able to return home safely? They have no idea what they’re walking into. They are NOT prepared for the kind of weather they got. Never again should states be lacking a strong electrical grid, not have adequate salt, sand, and plows for snow removal, etc. This is not being discussed enough! I’ll do my part and hopefully there can be some unity in this country to help where needed.

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.

Chronic Pain Awareness Month: Part II

I had x-rays done of half my body over the weekend. My results show nothing new (The radiologist was able to compare two to previous x-rays from 2018 and 2019.), and they completely denounce a phone diagnosis from late May; a diagnosis I did not believe for a second.

Even with natural pain remedies at hand, I’m suffering. They wear off so suddenly, you have no time to regroup. Despite having a prescription on hand, I haven’t touched it other than to verify the count. 😦 The deeper reality is: I have no idea when or if I will be prescribed pain medication again. I’m not “stocking up”, but I am saving them for “the worst”. The worst can be at a moment’s notice, tomorrow, or a week from now. It can be so sudden, so I am trying to be prepared.

My doctor is inconsistent regarding treatment methods, and he is out of the office this week. I sent him a brief e-mail letting him know I’d discuss this with him when he is back in the office.

Reading the x-rays was upsetting. Slight changes in the cervical spine, where I’ve already been diagnosed with arthritis. Slight changes to lower lumbar spine, where I was hit in the lower back in January of 2019. The radiologist recommended additional imaging and tests to rule certain things out. My doctor e-mailed a reply and glossed over this completely. He tried to say I have a pinched nerve; which did NOT show up on the x-rays. I came away angry, because if you’re going to make a claim like that, I want imagine to show I have it. I don’t want to be told I should, “Have a nerve block performed.” Where would it go?!

I’m tired. Tired of suffering. Tired of being in pain. Tired of the isolation. Tired of not being able to talk to too many people. And tired of the media hyping up ADDICTION in order to punish patients who suffer from chronic pain. I’m a patient. I have never used heroin, cocaine, illegal Fentanyl, ecstasy, you get the drift. I’ve never been attached to drugs; regardless of their status. But I do believe the DEA needs to get the fuck away from doctors and mind their own damn business regarding how patients are treated in terms of access to medication.

Every single day, I worry if I will be a device victim. Someone who is told, “We can put a pain pump in and refill it each month.”, in order to restore me to 25-50% quality of life. There are other things one has to worry about when a device is installed into their body; like leakage. I know people who’ve nearly died and had to sue the device company over the medication overdosing them, or not dosing them properly at all. Devices aren’t an exact science, despite what they will all have you believe. Their safety comes into question, and I know a lot of people with spinal cord stimulators who are waiting to have them removed because the device completely failed them. They are marketed as the “answer”. They are not.

I keep hoping for the right doctors, but today, I feel dejected.

Essential Appointments

Today, I went to an essential appointment with my headache specialist. Not surprisingly, she acted like nothing ever happened via phone between us.

This month is my two year mark as one of her patients, and aside from a few appointments where she actually knew my name, and my medical reasons for seeing her, this time she changed my name entirely. Say hello to Mary, everyone. 😂 I’ve been called worse, really. 🙄

The waiting room was predominantly empty, and no one can hear you speak  clearly with a mask on, so I said, “I know you mean me, but that’s not my name.” I had to repeat myself three times. When she went into the system to double check, she wondered out loud, “How the hell did I come up with Mary?” Good question, but I was there for medical treatment, it was not a social call. She put a note in my chart to remember my name for when I go back in early August. 😒

I mostly said yes to her incessant questions. With strict Covid-19 precautions in place, “Yes.” seemed like a great answer to help speed up the 20-30 minute procedure. I was polite, I listened, but I was also astounded that she asked how my migraines have been these past few months, especially since we JUST had that conversation where I was basically begging for alternatives for when a treatment method fails and I’m left suffering. This plea was treated with disrespect and disdain. That sorry excuse for a conversation was not acceptable, but I learned from day one to discuss those matters during follow-up appointments only. Otherwise, she becomes mentally distracted. You do NOT want a doctor distracted when the treatment process requires one hundred and ten percent of someone’s concentration.

I already had a migraine going in to this appointment, so I immediately went to the only place open that serves coffee (I miss you, Starbucks. That’s sad, given the full weight of what’s going on in this world. But hey, I’m human. I love their Iced Green Tea Lemonade and their Passion Tango Lemonade Iced Tea. The former is caffeinated a bit, the latter is herbal. I have gift cards saved to their app. I wouldn’t normally go there, otherwise, but I digress.) for Cold Brew. I was craving it for four days straight. They were out of both versions, so I ordered iced coffee with a shot of vanilla instead. I then proceeded to try making it as light as possible, while adding the correct amount of sugar so it would be lightly sweet. Ordering coffee after noon on most days isn’t a good idea to begin with. I haven’t had coffee in almost a full two years. I gave it up cold turkey because my medication, at the time, required it. No problem. I can give up high dose caffeine. I know most people can’t, but it wasn’t a hardship. I was still drinking iced green tea on occasion once I got the hang of the medication, and when I was unable to find the decaffeinated version, I would still drink full strength Earl Grey on cold mornings (I use a huge mug and two tea bags. I take my tea pretty seriously.). Otherwise, I was drinking my usual water and iced herbal tea. Repetitive boredom, but we do what’s good for us. Or at least, I try my best to do so.

Turns out, I’m still finding coffee incredibly disgusting. Three sips and I was so nauseous, I contemplated whether or not I needed to take Promethazine. I wanted the caffeine to help my migraine, but right now, only ice cold Coke Zero or Pepsi does the trick. When either one tastes REALLY good to me, the caffeine will help considerably. Under normal circumstances, I don’t touch the stuff.

The artificial sweetener most widely used is a neurotoxin. It hasn’t been researched enough regarding the long-term effects on the human body. However, many people are often misdiagnosed with severe neurological or pain disorders when what they REALLY have is Aspartame poisoning. Too often, you aren’t asked about your diet or what you drink, other than alcohol, so I can only wonder how many people are drinking this stuff daily, in one form or another, and making their health worse. I’m pretty good about eliminating things and not looking back.

I cut all of these things out when I was first diagnosed with migraines. There’s a long list that you have to eliminate to see if they are triggers. You can slowly bring things back into your diet, providing they don’t make you sick. I have researched the fact that this sweetener causes insane amounts of inflammation in the body. Even twenty ounces can set you back if your body was trying to heal itself. Unfortunately, the sugar in the regular versions is way too much. I’m a purist; I will use real butter, heavy cream, real sugar, etc., when making specific things for myself, family, and friends. While my taste buds can easily tell good from bad, sometimes you’ll do anything for relief. That’s how bad my migraines have been.

Upon returning from my appointment, my head pain was moving into my neck and I was MISERABLE. I am used to this, sadly. I know it takes a few days or two weeks to start feeling better. Hopefully I can get there quickly because the pain turned into a full-blown flare up, and I can barely think straight. Sleep would be great, but isn’t likely to happen at the moment. 😔

I’ll be recovering from this treatment, but I’ll still be around to share bits and bobs. 😉

© 2020 by Lisa Marino and Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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