Sinking

The precise word I’ve used to describe the hell I’ve been going through is, “Sinking.” I say this to my doctor at least twice a month; “I’m sinking.” He gets a confused/torn look on his face and tries to distract me with questions. I’m thisclose to losing my patience. 🙄 I worry that one day, I will not employ a filter and will say, “You went to medical school to give me that face? I hate to inform you how ripped off you were.” Alas, I try not to be rude to the one person who, medically, has my back. I respect the fact that he doesn’t humor me, roll his eyes, or try to dismiss what I’m saying, but sometimes, I think we’ve collectively met a frustration moment because nothing is helping me.

Am I sinking right this second? Yes. I had a mental plan in my head for how today would go. I woke up early. Much earlier than I planned, so I shut off my alarm and started my day. I cooked a real breakfast, which seems like nothing special, but I am not always afforded the time and space to do this. Today, I was, and I feel healthier for starting the day without having my eating disorder screaming at me. I took care of Cat and Kitten (mostly because Kitten came looking for me a little before 5:00 a.m., but also because she was staring at me. Hard,). I responded to some business e-mails and found out a package will arrive today, one which was not expected to arrive until the 16th. Not bad. Then I started hearing potential construction. I figured maybe a neighbor was having gas or oil delivered, but when I checked and found all these trucks and equipment, I nearly lost my temper. My next door neighbor is having her driveway ripped up and expanded. Okay, great, but did they have to start working before 7:00 a.m.? 😡 They are also incredibly close to the property line, so I keep waiting for them to do something stupid, knock something out, or damage something. At this point, nothing would shock me. There are chunks of concrete just piled up on the street. I don’t want to assume they will remove it properly. I can’t be the only person agitated by this. They are taking up half the damn neighborhood.

Ultimately, this incident messed with my mindset. I had a panic attack from the noise, and now my adrenaline is dropping. Turns out, adrenaline crash is serious business. It made me realize I didn’t get enough sleep to do what I’d planned for today, and whenever I can’t do something, I feel worse than anyone could possibly imagine. I am going to give myself some time, and if I can do it, great. If not, I will add an additional hour to my prep time and do it tomorrow morning. Not ideal, but at least it will get done, and I can see how I feel when I leave the hospital.

I have to stop beating myself up when unplanned things trip up my anxiety or add to my stress levels. I’m not good with external noise. It’s reached trauma-level for me. I used to think I was being unfair with that, until a friend admitted she feels the exact same way and talked about how it affects her. I suddenly realized I’d been gaslit into thinking I was the problem. Mind you, I’m not outside attacking anyone or screaming. I’m just suffering in silence, and that’s unhealthy.

Over the past few days, I’ve received some texts and lengthy messages thanking me for various small gestures. That was nice (Wait, I’ll get there.), but having to turn down a standing invitation nearly made me tell one of these people that I will never, ever spend a holiday with them.

Let me preface this by saying that this person is a repeat offender and I’ve got no patience left to deal with the rudeness. A deeply disrespectful comment was made to me about a year or so ago by this person’s partner. Instead of putting this person in their place for how disrespectful they were to me, I moved into a place of, “This isn’t going to work out if I can’t be honest.” I’m tired of having to protect the other person from their spouse. I chose to say nothing, because sometimes silence is the only answer someone deserves. It’s not about being mean or manipulative, or even hurtful. Those thoughts don’t cross my mind because I know who I am and where I am coming from when I stop speaking to someone. The silence is more about someone crossing your boundaries and you deciding what’s best for your well-being. I decided it was best for me to back away even further, because I don’t need anyone’s toxic opinions or bullshit directed towards me. That’s not welcoming, that is behavior which instantly pisses me off and let’s me know that I will not be able to remain civil moving forward. Like I said, I know where I’m coming from. This person has no clue how I think/feel, and they don’t care. It’s not worth me turning it into an argument because there’s no peace to be had. I know this.

If I am, for example, having a horrible day (Usually pain related, but it can be other things affecting me, as well. I’m human,), it doesn’t give me the right to go out and be toxic towards others. It doesn’t give me the right to be a disrespectful bitch, either. It’s actually when I most need to withdraw from society, write, listen to music, cry, whatever I need in that particular moment, on that particular day. I give myself the space to honor me. I say nothing. I speak to very few people. Believe it or not, about ninety-eight percent of people don’t care about your feelings or what you’re going through. They care that they aren’t the one going through it if it’s bad, though, so it’s important to surround yourself with the two percent who actually give a damn about you, good or bad, no matter what. For me, that’s under ten people. I am okay with those numbers, because it’s honest. I see these people clearly, and their support and love comes from a genuine place.

One message I received sent me right back into a state of pure silence with a specific individual, after I rolled my eyes in disgust. It was a lengthy, “all about me and my life” kind of message, with a few lines asking about how I am doing. Three in total. If my phone wasn’t expensive (I feel like they ALL are, especially these days.), I would have thrown it across the damn room. I came away angered, irritated, and physically ill. This person is so fucking toxic, and my body responds negatively to interactions with them. I tend to keep them to the bare minimum, and I’ve actually ceased most communication. I’d sent a polite holiday card and received verbal diarrhea as my, “reward”. I have to make the decision to cease communications permanently. I have to put my health above their stupidity.

Sometimes, there are clear signs you need to cut a relationship off. You might try to hold off on this for days, weeks, months, or in this case, YEARS, but inevitably, you cannot continue on. Ten plus years and I am still trying to give this person chances. It is okay to acknowledge this and the fact that I can no longer do it.

It doesn’t necessarily matter who the person is, because if you feel sick after dealing with them in person, or you get physically ill after reading a message from them, then your body is keeping the score. Your vibration is rejecting their stupidity, selfishness, ego, attitude, or something else that you inherently CANNOT work with. It is completely fair to honor this about yourself.

I am moving in a different direction. I wish people well, but I can’t stay on their level. I have grown and I have leveled up. I can’t take myself down to their level whenever it suits them to deign to say something to me, and then be sick from giving them the benefit of the doubt or another chance. I’m not going to shrink myself to make anyone else feel better ever again. I deserve better, and they deserve to have people in their lives who vibrate on their lower level. It isn’t my responsibility to take care of everyone. I tried. I even asked someone if I was being fair and they said, “Lisa, you’ve been fair for twelve years. This is out of fucking control.”

I am many things, but I’m not a people-pleaser. I’m not going to gossip about anyone. I am not going to engage after you disrespect me or mine; that’s a line you don’t want to cross with me. I am not going to play into anyone’s victimization of self. I’m not going to constantly give someone chances to hurt, minimize, or disrespect me. I feel like that’s been a running theme lately, and I refuse to engage with it. I’m not going to permit ANYONE to re-traumatize me. I’m going to be stronger, smarter, and meaner. I’m going to be exceedingly discerning as to who I let get close to me on ALL levels. The door to my life is not open for newcomers. A spot at my table is a spot which must be earned. My time is valuable, and I won’t waste it on anyone who doesn’t understand that relationships are two people giving one hundred percent. Yes, there are times when you cannot do that, but you admit it instead of pretending.

I won’t be responding to anything or anyone while I focus on myself. I’m truly done giving out extra chances and opportunities. If people fall to the wayside as a result, that’s fine. I know who I am and what I bring to the table. This isn’t about being cruel or hurtful to anyone, as they have consistently chosen to be unacceptably rude to me, but it is about taking my power back. It’s redefining the term, “No.”, and sticking to it because these interactions affect my sanity. I deserve to let, “No.” be what it is. A complete sentence.

We’re currently in Aries Season♈, which is the first sign of the zodiac. For me, one means ‘New Beginnings’. I also look at the Hebrew aleph bet in a similar way. Aleph is the first letter and represents the number one in Kabbalah. One means starting from scratch, if you must, and rebuilding things in YOUR true vision. It’s the beginning of the zodiac wheel, and I take it seriously.

As the eighth sign of the zodiac, I am the embodiment of life, death, and rebirth. I might fall, but I’ll come back stronger. The actual symbol for this is tattooed on the top of my spine. You’ll sometimes hear people say we have four phases as Scorpion, Serpent, Eagle, and Phoenix, where others will omit the Serpent completely. I’m moving towards my phoenix phase. I can feel it. Others can see it in me. People have commented about my new energy or my good energy, usually people I don’t expect it from. That, in and of itself, is a positive thing.

Some people can see/read auras and some people simply pick up on a vibe from others. I saw auras more as a child, and I still see them around babies/infants and animals. Most animals are gold or silver, which to me, represents their pure natures. Babies might come up in lighter shades of purity, too. If I close my eyes, I can feel my aura is indigo and blue. Sometimes I can see the colors out of the corner of my eye. I don’t come across a lot of people who have these colors intensely attached to them. Sometimes I know there’s purple or yellow around me, or even grey or red. Not all colors are permanent aspects of one’s aura. Sometimes we will temporarily have an inauthentic color attached to our aura due to life circumstances, stress, illness, etc. The issues will pass and the color will leave. Anyone who talks about auras and their colors will see things differently and read color differently. I know someone who constantly talks about how rare pink auras are, but then declares every other woman pink. They will also say not all people are empaths, but will then declare every other person they read as an empath. That’s inaccurate, so I give myself space from people who don’t practice what they preach.

I’m moving towards physical, mental, and emotional betterment. I don’t have time for anyone who isn’t on the same frequency. I have to release all the negative energy which others have placed upon me in their journey towards whatever… A true empath knows it’s not his or her energy to own, but the ugly energy others have given out. It can cling to us like soap scum. Not only am I wearing sage perfume from here on in, but I’m done being the emotional dumping ground for people who cannot return my energy. I know my worth.

In life, sometimes silence and walking away is the healthiest choice you can make before officially cutting people off. Today, I’ve made my choice. I say goodbye to the energy and happiness vultures, for which there are many. I wish them growth and healing, just NOT with me in their lives. My journey no longer involves their presence.

I thought I had finally gotten a handle on my sleep, until Saturday night. I tossed and turned for three hours. I was then furious at the wasted time, so I got up and occupied my mind until I finally knew I would fall asleep. It was freezing, so Kitten was with me, trying to stay warm and still be close by. She was pacing in agitation, because she knows I’m not okay, and she tries to make sure she’s with me as much as possible, but to own a cat is to know that they will choose where they’re going to lie down and they will also choose who they will be with. Unfortunately, I don’t have the option of my current sleep cycle this week. I have four doctor’s appointments beginning tomorrow, one of which is an emergency appointment to rule out surgery. Only one is a video this week, which means I can stay home that day, so I am trying not to have a complete and total meltdown knowing I am dealing with so much. It brings a lot of anxiety to the surface, unfortunately. If you are lucky enough not to experience such feelings, that’s all well and good, but for those who do suffer from anxiety, we aren’t harming anyone. We’re struggling.

Two appointments this week are for in-office procedures. One hurts like hell, but isn’t a huge issue. I have experienced far worse pain, but it’s something done without anesthesia, and my doctor is exceptionally blasé about telling you how it will feel and how it will or won’t heal. She has repeatedly failed to provide information to me which she puts in my medical chart, which genuinely angers me. I only found out when her partner informed me during a Telehealth appointment, and he was very helpful and descriptive. I followed his instructions and was pleased that he got me in three months earlier than originally planned. I will likely say something about her lack of information this time because I’ve had enough. The other procedure requires at least two solid weeks of physical rest. It means adhering to little to no activity, except for walking (You live, you learn. When I rest, I don’t suffer constantly. If I don’t rest, I suffer terribly.). That’s if I get the okay from the orthopedic surgeon to walk on my injuries. I have no idea what he will or won’t say.

A little over two years ago, I fell and injured my right knee, foot, and ankle. I had fractured bones in my foot and there were some tears in various tendons in all areas. The doctor saw me about two weeks after I fell. He wanted me to make big changes to my footwear (I have.). He also wanted me to stay off of my right leg whenever possible, while still being realistic that even in pain, I have to move around. He was hopeful that it would heal on its own and I wouldn’t require surgery, but he was honest and made no promises. At the follow-up appointment, I was lectured that if I didn’t stay off of it more, I’d almost certainly require surgery. Inevitably, I left the office incredibly frustrated because I had truly stayed off of it to the best of my ability. Then Covid put us all into lockdown and my June follow-up was canceled. Without calling me, his office proceeded to cancel appointments for July, September, and then they didn’t bother to get back to me at all when they reopened. He was backed up with surgical patients, post-op appointments, etc. I let it go because I wasn’t in constant pain, but a few months ago, I felt things get bad again. I thought I’d sprained my ankle, but no, it was the whole knee, ankle, foot combination all over again. I have since done something to my left knee, as well. I was granted an appointment via their cancellation list, mostly because they saw that they’d canceled on me multiple times without an official notification of any kind. Mind you, I hurt myself in January of 2020. I don’t know what he’s going to say this time. He had initially prescribed high strength Aleve, and I still have most of the bottle. It simply isn’t strong enough. I’m not going to argue with him about it, but if surgery is involved, I am getting it in writing that my pain will be fully managed before, during, and after the fact. I am not playing the, “You need six months of physical therapy.” bullshit with him, or anyone else. I can’t even say how often I am using Magnesium Spray or topical lidocaine patches for temporary pain relief. I’ve barely made a dent in the bottle, but it feels like I use it way too often. On the plus side, it is fast-acting, as opposed to taking a daily supplement. It’s drying on the skin, but nothing a little extra moisturizer won’t fix. There are days when it is my saving grace. I try to use homeopathic remedies so long as they work, even though they aren’t covered by my insurance.

Having a week with a bunch of appointments squeezed together over the course of three days isn’t common for me. This happened and I had to give myself time to agree to it. I’ll feel a lot better when it’s over and I know more. At least I hope I will. A girl can still pray for good news and quality medical care.

So, that’s where I’m at this week. One hour at a time. I’ll be back, as I pray for a complete reduction of pain from head to toe.

Have a good week, everyone! 😊

copyright © 2022 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.

It’s Amazing

It’s amazing how quickly life shifts. You think you know your place in this world, and the direction in which you are going. Then, often suddenly and unexpectedly, a letter, phone call, e-mail, or some form of communique shatters the floor beneath your feet. You’re left standing and asking yourself “Why?”, or in my case “Again?” There’s only so much I can handle in a day, but I’ve been dealing with horrible shit for the past eighteen years. When the hell does a person catch a break?! In this respect, I am trying to remain intensely positive because negativity doesn’t help situations one cannot control. The fact that I knew this would happen a few years ago is what upsets me the most. Sometimes, I hate the gift of premonition, and other times I am grateful for it.

12289576_1083547431655664_8553230736143236147_n

On September 12th, I hurt my back. The pain has progressively worsened. I am terrified to seek emergency treatment due to the “war on opiates” and how badly pain patients are being treated everywhere in the United States. Massachusetts is no different. Every single day I have to hear about people overdosing in various parts of the state. Not on prescription pain medication, but on heroin. How is that MY fault, as a pain patient?! A representative for someone running for State Representative for this district was going door-to-door last Saturday, and specifically asked to speak with me. Obviously they’re looking for the millennial vote. 😉

Her first question was “How can Jen insure your vote on November 8th?” Boy, did she come to the right house. We spoke for about thirty minutes regarding Jen Migliore‘s policy for the opiate issue in this state. I said “Until she works to make sure pain patients get treated like patients, instead of drug addicts, she can’t count on my vote. Until she addresses it and does something to put addicts in a separate category from actual patients, she can’t depend on my vote.” We talked about other issues too, but I made sure this one was front and center. She assured me that if Jen doesn’t call me personally, someone on her campaign staff will. I’d actually be surprised to see her at the front door again because she’s already personally been here once, and that was to get her petition to run for office signed. She was a little too much the “made-up politician” for me when I met her, but it was brief and I will try not to judge a book by its cover, because all too often I am judged for “not looking sick”. She’s 25 years old and running for State Representative, and that takes guts. Is it terrible to say I want to re-do her makeup and make her look more her age?! :/

dontyouhaveahobby

A few days ago a woman stared at me on the street and said “Oh my G-d! What a beautiful girl you are!” I was the only person in a full block radius she could have been talking to, but it startled me. If she hadn’t been old enough to be my Grandmother, I might have believed her. But then I got home (barely) and looked in the mirror. Not only don’t I “look sick”, but I actually looked amazing, for a change. I almost, ALMOST, indulged in a selfie. The first time I took one was about two weeks ago. I sent it to my brother who said “Holy shit! You look so different.” I said “Different bad or different good?” and he said “Good. You look SO GOOD.” My brother never compliments me, so I know it was a genuine reaction. I then sent the same photo to my best friend in Germany and she said I look absolutely beautiful. I suspect cataracts. 😉 For me, it’s a huge issue for others that I “don’t look sick”. My body, however, begs to fucking differ. 😦

But I digress… I have been off of prescription pain medication since 2012. I was the kind of patient who could make fifty Percocet last for two months, or longer, but the majority of my pain medication that I’d refilled each month (because my insurance paid 100% of the cost) was stolen by a family member in late 2012, someone who went through my private things and took thousands of Ultram and about hundred Percocet I had legally obtained for “bad days”, NOT for someone to get high off of. I was enraged when I discovered all of my medicine gone. I legitimately had the ration out what little was leftover for “bad days”. I wanted the person who did it to die; because they couldn’t respect my private space, my private things, or the fact that I am a pain patient that needed that medication to get through every bad day I experience. All of that “back-up medication” was in case I got cut-off from a physician, insurance, proper treatment, etc. Instead, it went to someone who was drug-seeking, and who, to this day, is still apologizing for it because I will never let them forget how evil what they did was.

Four years later and I have exactly two doses of Vicodin left for “bad days”. One pill that I cut in half in order to have two doses. I am in such agony as I sit here typing this that I desperately want one of those doses, but in the back of my mind I know I have roughly nine Aleve in my system. I also know that the pain is so intense, the Vicodin won’t work. 😦 If I had taken it when the pain was still bearable, it would have worked, but it also would have worn off by now. I shouldn’t have to be afraid to seek treatment, but I am. If pain management clinics aren’t doing their job (and there is a long wait to get in, providing you get referred to one.), and rheumatologists are now refusing Fibromyalgia patients and telling them to see neurologists, then where the hell do I go?! Do I pray for a solid PCP and hope they’ll give me Ultram and Flexeril to get through all the “bad days”, or do I hope for more?

My feeling is this: The last three states I’ve lived in royally fucked up my medical history. Each state has, over time, shredded my files instead of turning them over to me, which I feel is every patient’s right, even if we have to pay for the photo copies. My concussion history, which began at a very young age, is non-existent on paper! It makes me look like a liar, and I’d never lie about concussion or post-concussion syndrome, which I still have. There are maybe three doctors who still have files on me, but no one else does, and that means I have to start at square one.

This means going to a PCP here and not saying I have Fibromyalgia. I’ll declare my other health issues, like the migraines, but I am not using the dreaded “F word” with a new doctor until he/she mentions it first. It means letting them run every single test in the book and being officially re-diagnosed. It also means immense stress because I KNOW I’m suffering. I KNOW I’m in pain. I KNOW my blood work does not show any other auto-immune disease, but in the back of my mind I have the “What ifs”. We’ve all had these moments. “What if it’s actually Lyme disease and I’ve gotten false negatives my entire life?!” or “What if it IS Lupus or MS?” Of course, none of those other diagnoses make an ounce of sense; not one. I don’t want to waste my time going to physical therapy (I already know it doesn’t work) or anything nonsensical. This is less about medication and more about the correct treatment methods.

The last neurologist I saw told me Botox for migraines was likely my only remaining option for now, so I need a new neurologist to agree with that and get it approved. I’m okay with needles if it works for me. I’m okay with MRI’s, X-Rays, blood work, etc., so long as I see results in my treatment methods. New MRI’s and X-Rays will show the damage to my spine, which explains much, but who knows what else it will show? I don’t care, so long as it means I am getting the correct treatment.

I have zero faith in the medical community. I’ve been treated here once in an emergency and the Urgent Care staff was amazing, but I had injured my eye and the only thing I was given, despite being in pain for months, was antibiotic gel to put into the eye multiple times per day. I’m still using it, because I don’t believe my eye is fully healed. There are days when it looks SO bad that I worry, and while my vision is not any more impaired than usual, it’s disconcerting. That’s okay though; I need a vision exam ASAP any way. There’s nothing like new glasses and new contact lenses. 🙂 Perhaps I’m the only one who gets excited about such things.

I’m sick and tired of the stress pain patients are put through, and the scrutiny of whether or not we “look sick”. No, I don’t “look sick”. I have seen the faces of other Fibro patients and was absolutely mortified. It made me question so much about myself, and not in a good way.

I have blank cop face most of the time (it helps me avoid wrinkles. Well, that, water, genetics, and SPF 50.), and yes, I wear makeup. I don’t do it for other people; I do it for me. It’s an artistic skill-set that I find enjoyable. It doesn’t mean I’m in less pain than one hundred other people, and I’m not going about to compare and contrast because it is NOT a competition, but when I look in the mirror, I realize why I get treated like my pain isn’t real. My eyes are not dead; they sparkle. My skin is healthy and looks good, with or without makeup, and even my bad hair days are still relatively decent. I don’t look exhausted, even when I am. I consider most of this genetics and the fact that I take really good care of my skin, but it makes me feel even worse to know I don’t “look sick”. Again, it’s not a competition, but I am judged for this harshly.

My body is filled to the brim with pain, but I don’t “look sick”. Would I say that to a cancer patient wearing lipstick? NO. However, unless a person tells you what they suffer from, you just plain don’t know what their battle is in life.

It would be nice to live in a world where we judge less on appearances and took people at their word. Of course, Donald Trump is also running to be President of the United States. Perhaps I’ve landed on the wrong fucking planet! 😦

copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

sam_1271
Cat is almost three years old! My poor little boo isn’t feeling so hot. 😦 She looks the way I feel.

Zombie Lisa

dueto

I had something great planned, and then insomnia bit and there’s no way I will be able to put the finishing touches on it this morning. Perhaps later or tomorrow. At the moment, I am in desperate need of serious sleep. I am so tired, I’m shaking. 😦

I’ve had four migraines and a couple of minor headaches since going back on Topamax. I increased the dose to 50 mgs a few days ago accidentally. I went to have breakfast one morning and I was running late. I misplaced the pill I’d set aside, and ended up taking two without realizing it. However, once I’d done it I decided it was probably safe to keep doing, though I’m afraid to move to 75 mgs any time soon. I am not 1000% certain it’s the medication because this has never happened to me before. It could be any number of things, but I highly suspect this medication is turning me into a crazy bitch. I don’t say this lightly and if anyone else ever said it I’d knock their teeth out because there’s nothing funny about it. (I have since added three different apps to my phone because these pills are tiny and you never know when you’re going to need a reminder. It takes a split second to drop one and think you’ve taken it.)

It could be stress, hormones, not sleeping well, a combination of all three, or it could be a side effect of the medication. It DOES make me really sick if I go past 125 mgs, so I just asked Case Study One if I’ve been crazier/bitchier than usual. I’m pretty sure he told me to wash my face, brush my teeth, and go the fuck to bed. Truth is, I know he was avoiding answering the question. I’m not sure why men think valid health questions are “tricks”.

The physical pain is still a constant. I have my good days and my bad days. This will always be true. I spent several hours researching some new pain treatments yesterday and I will be going over them with the next doctor I see, which will hopefully be soon. When I actually look forward to seeing a doctor, it’s safe to say that hell has frozen over and become a ski resort. Take blood, run tests, and write me out all the necessary prescriptions. All I care about is feeling better.

All bets are off if the doctor says one insulting, mean-spirited, unnecessary word. I have Fibromyalgia, I’m not in your office for heroin.

copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

ifyouseeme