Wound Up, Fucked Up, and Everything In Between

2023-09-082023-09-08 Miss Poison Chronic Illness, Chronic Pain, Pieces Of Me, Poison In Lethal Doses, Writing Blood Tests, Brain Fog, Chronic Back Pain, Chronic Fatigue, Chronic Pain, Health, Honesty, Life, Pieces Of Me, Poison In Lethal Doses, Suffering, Writing

The days and weeks have, unfortunately, blown by. Many have been incredibly unkind. I rarely know what day it is anymore. But today, it dawned on me how long it had been since I’d updated. I am not going to apologize, because it’ll sound like a broken record. None of us wants this. It’s annoying, and it can seem disingenuous.

The past few months have been unexpectedly hard on me. So much seemed to be heading in the right direction, and the crash took me, not by surprise, but it’s made me feel like the victim of multiple assaults via vehicle. That’s only a small part of how I feel.

Pain from my hands to my toes. From my head, up. My entire body has been, “off”, for lack of a better term. At times, the issues I’ve been having and the pain have been so bad, I’ve prayed for my death. All I want is quality of life, and I am constantly being told, NO.

For example, I met a new pain specialist last month who had nothing to offer except x-rays of my neck and lower lumbar spine (To see what everything looks like now. After verifying that I NEVER had a pinched nerve, despite being treated for one; twice!), a mild muscle relaxer which I can take long-term, and a list of treatment methods I’ve already done. I was fed up, mostly because I felt like my appointment took forever. My handwriting wasn’t even legible on the forms I filled out, except for my signature (Yes, I have a real one.).

Despite what this woman rambled on about, I am not stupid enough to do physical and aqua therapy for the next 2 to 5 years of my life before she will act on my pain. What’s worse? She made herself into the victim for having to do some paperwork. REALLY?! I’m in pain 24/7, it is getting increasingly worse, but I should feel bad for her because she gets paid half a million dollars a year to do her fucking job? NO. No fucking way! It was one of the worst attitudes I’ve encountered in a while, and it reminded me why I try to handle all of this without medical intervention. Each new doctor insults me, says or does something completely disrespectful, and/or inappropriate. I expected nothing, and that’s pretty much what I got.

I walked out that day and had no tolerance left for the constant medical gaslighting. I will have the x-rays done ASAP. I will not see this doctor again. I can read the x-ray report myself, and communicate by phone. I will request a new referral to a different pain clinic at a completely different hospital. I spent more time with the intern, who really took the time to get to know me and my history, than I did with the doctor who walked in with a, “There’s nothing I can do for you.” attitude. What bugged me the most was the intern telling me I am still a competitive athlete, and I “can power through this.” Intractable, chronic pain is not something you, “power through” when you aren’t sleeping, can’t do 95% of what you would like to do, and your pain has worsened exponentially in the past year, alone. Sitting is the only time I am semi-comfortable. Sleeping is painful. Walking isn’t always possible. Sudden movement? Not a good idea.

As I write this, I have severe contusions from getting blood work done. My left forearm is deep black, blue, and purple, a vein which produced so little blood, the phlebotomist said it would be disposed of (Lovely! Go on and waste what little I’ve got!). My right hand is a full blown bruise encompassing the entire top of my hand down to my knuckles in lovely shades of red, blue, black, and purple, swollen, and this was just for two vials. What’s worse? My results are confusing. Despite supplementing, eating foods high in vitamin D, and actually being in more direct sunlight than usual this summer, I am once again D deficient. This means two plus months of high-dose supplementation. Ultimately, this also means more testing. Something is wrong, and I can’t figure out precisely what it is just yet. Not without additional answers. This will include a full genetic screening to find out what the hell is going on. If I go missing, I am overbuying Gatorade, coconut water, bottled water, and mushroom elixir (Check out my Instagram page for updates on that!). I started the year off with jasmine rice, egg noodles, and homemade chicken soup. Looks like I will end it in similar fashion.

Summer is officially over on the 23rd, thank G-d! I am looking forward to Fall weather, but not the actual fact that 2023 blew by in a whirlwind of illness, unanswered questions, trying to be strong, suffering, lots of needles, nearly going into complete brain and body meltdown, and my constantly wondering why the medical community hates their patients. I am the perfect example of doctors going against the Hippocratic Oath. They are doing harm. One doctor numbed the back of my head so badly early this year, that she managed to numb my bladder. It’s been close to five months, and I am still experiencing side effects. Just ponder that for a moment, because she completely forgot to tell me it was a possibility.

The Jewish holidays are also approaching, with Rosh Hashanah beginning on the evening of the 15th. I intend to be as low-key as humanly possible for all of the holidays. I will be focusing solely on my health for the remainder of this year, as well as the manuscript I have been hard at work on, along with fun projects I’ve got in the pipeline, which are being held up from a legal perspective, as opposed to procrastination or any kind of laziness on my part. It will all work itself out, this much I know. I (finally!) will meet with a new primary care doctor this Fall, so here’s hoping I do get some answers before I’m old and grey.

For today, that’s my update. Sleepless, writing my ass off, and trying to be present when all I can truly say is, this year has been a fucked up nightmare. Here’s to pulling myself out of it and finding the proper path.

Have a good weekend, everyone!

Brain Problems

2016-11-29 Miss Poison Autoimmune Disease, Being Real, Fibromyalgia, Health, Honesty, Life, Musings, November, Pieces Of Me, Poison In Lethal Doses, Writing Brain Fog, Fibro Fog, Fibromyalgia, Honesty, Insults, Life, Musings, Pieces Of Me, Poison In Lethal Doses, Writing

10501792_1101324749884898_3992262528277158865_n — I have exactly ONE PERSON in my life who has done the research and offered his help. Out of so many who could use their brains, my cousin chose to use his.

No, the title isn’t meant to indicate an actual health issue. Not that I’m aware of. However, Fibromyalgia Brain Fog, also commonly referred to as “Fibro Fog”, has really done a number on me this month. It was slowly progressing, but now I feel dumber than a box of rocks with twelve piles of shit on top. It’s scary, freakish, and makes me feel terrible about myself. Only another sufferer can truly understand how much pain this puts me in.

I know these are common daily occurrences for a lot of people who struggle with Fibromyalgia and other auto-immune diseases, but my incidents have been sporadic and easily managed, up until now. This weekend has pretty much brought me to my knees on the memory front. 😦

If you ask me about something from when I was two or three years old, I have complete recall of the entire moment. If you ask me why I tried putting black pepper in the freezer, I’ve got nothing. If I didn’t set the timer on the stove, I’d walk away from preparing meals and never go back (I ALWAYS set the timer, even if it’s just ten minutes, it’s loud enough to bring me back in order to focus.). I have to be 100% in whatever it is I am doing, otherwise I am going to end up cutting myself, burning myself, or forgetting what the hell I’m doing to begin with. There is nothing normal or acceptable about this.

To add insult to injury, I put notes on my phone as reminders for pretty much everything. I take this phone with me wherever I go, and yet, I still forget what the hell I’m reading and end up deleting at least 50% of the note before I’ve left most stores. It’s utterly pathetic. It’s also sad, because I’m tired of searching cabinets and the refrigerator/freezer for things I forgot to buy. I then add the missing items to next week’s list, only so the cycle can continue on in an ugly manner. I have to start each list with cat food and cat litter, otherwise it’s entirely possible I will forget one, the other, or both. This past weekend, I forgot the litter. The plus side, there’s 20 pounds of it sitting near the litter box from the weekend prior, so all I have to do is change the damn thing. The fact that I can even lift 20 pounds these days is miraculous to me. 😦

I think I would be better able to cope with this lack of brain function if I were over 75 and had achieved all of the things I set out to do with my life. I’d be able to say “Hey, I’ve lived longer than my parents. I’ve accomplished all of this. I’m simply getting older and forgetting things. It’s not the end of the world.” However, I’m nowhere near 75, not even close, and yet, my brain is suddenly turning to mush. I tried refrigerating herbs when I was cooking earlier (obviously, that’s not where they belong). As soon as I realized what I was doing, I nearly dropped all of them on the floor and burst into tears.

These incidents are made worse by the criticism of others. “Do you even have a fucking brain?”, I was asked earlier this month. “You really DO live in your own world.”, I was told the other day. These are things I’d never say out loud to someone I know is sick, leave alone healthy.

If you have someone in your life with an autoimmune disease/disorder that affects their brain function, I would like you to walk a hundred thousand miles in their shoes. I want you to spend 365 days in their body before making a single derogatory remark in their direction. Our ears are fine; we can fucking hear your offensive, rude negativity. However, if you don’t understand the illness itself, shut the fuck up. You’re not making the situation better, and how you treat someone is just as important as how you speak to them. Unfortunately, we live in a world where everyone wants respect, simply for existing, but they don’t realize their behavior is what garners respect. Moreover, we all express our feelings differently. I prefer to say a lot of things to people privately, eschewing public professions. Some people seem to have a deep-seated need for the public professions though, and it baffles me. Just because we live in a selfie-filled world doesn’t mean every single thing we want to say ought to be made public.

You can argue that by writing it, I’ve made it public, but here’s the thing; I didn’t name names. I rarely, if ever, do. I talk in code with my friends, we have our own private language, and I write in code a lot of the time, too. You get the gist of it, obviously, you just don’t have faces and names to attach to what I’m saying. It’s like reading a book. You get descriptions of characters, but you are left to your own devices as to what they might truly look like if you met them on the street.

So, even with my “brain problems”, I don’t have “writer problems”. Thank G-d and Goddess for that!

Shutting Down

2016-03-052016-07-21 Miss Poison Honesty, Life, Musings, Pieces Of Me, Poison In Lethal Doses, Writing Autoimmune Diseases, Brain Fog, Chronic Pain, Depression, Emotions, Fibro Fog, Fibromyalgia, Honesty, Humanity, Life, Lyme Disease, Migraines, Musings, Pain, Poison In Lethal Doses, Unhappiness, Writing

I’ve had roughly six pain-free hours in the past two weeks, so bear with me. I could never say “I hurt.” enough. 😦 That’s not even the appropriate terminology for what I’ve been experiencing, and I hate it.

Pain isn’t always physical. For me, it often is, but sometimes pain is also emotional. I don’t care who you are; we’ve all been there. Whether we care to admit it or not, it is a fact of life, in varying degrees. No one lives a supremely happy existence 24/7. If they do, they aren’t human.

I hate making plans for a day, or even two consecutive days, and not being able to do much of anything, save washing my face, brushing my teeth, caring for Cat, Kitten, and OGK, and doing simple things, like a load of laundry, or cooking a meal. I know for some people, the thought of cooking a meal as a Fibro/Chronic Pain patient means “heavy duty work” (and it’s something so many of you have told me you no longer do, for various reasons.), but for me, it truly is simple nine times out of ten. If it were too much for me, I wouldn’t do it. If I couldn’t do my laundry, it would simply pile up. There are days when I just want to walk out of the house and not come back. Far more than I care to admit. The past few months, I have felt that way a lot. More than a lot. It’s been a daily struggle.

It’s unbelievably lonely living in a state where you only know three people, where you’re almost completely isolated, where the TV and your laptop (and the cats) are your best friends. It’s not just lonely, it’s sickening and pathetic. But here are the facts: I am not a joiner. I do not talk to strangers simply to “connect” with new people. That’s not me. I am not a small talk kind of chick. I will not discuss nonsense with anyone simply to have something to run my mouth about. You’d think some people would appreciate that level of depth, but instead, people simply see it as me being unpleasant, a bitch, or any number of other things that aren’t true. Ultimately, the truth of the matter is, I am too honest. I lost my filter many moons ago, so if you ask me a direct question, you may or may not like the answer, but that’s not really my problem.

I make an exerted effort to pull back on my temper and be supremely polite and engaging, but if a situation really doesn’t involve me and there’s nothing for me to say, I will quietly observe. The last time I checked, this was not a crime.

I’m hurting, and no one sees it. No one cares enough to do so.

I want to sit, eat chocolate, and cry until I cannot see. Perhaps I have not received the support I need because this is the first time I’m voicing the distress I feel, but come on?! How blind is everyone?! Things are so bad in my life at this moment, I have no idea how to pull myself out of the mess that it is, and yet, all the outside world is going to see is the girl with the makeup on who forges ahead. I could be bleeding out of my eyeballs, but no one would notice that, not unless it started spraying everywhere which, I agree, is completely unsanitary, despite the fact that I am free of blood borne diseases.

My attention span is so poor that it has taken me several months to finish a book I would normally read in a few hours. I cannot watch an hour of TV in one sitting, because my mind wanders and then I have to rewind it back to where I was initially paying attention. And yet, I somehow managed to sit through one of the worst movies EVER (I’ll tell you which one if you ask nicely.) in two sittings, desperately waiting for the fucking plot. Guess what? There wasn’t one, it was absolute garbage. I’d like to get that two hours of my life back, along with three hours from a few years ago that I had to spend dealing with a family member’s meshugas. I’ve since stricken this person out of my life much the same way Ramses tried to strike Moses out of The Ten Commandments (If you haven’t seen this movie, shame on you.).

Too often people refer to their autoimmune diseases and mention how it deeply affects their brain function. They are 100% correct in that it does affect our thought process, among many other things. There are moments when I feel like someone has erased huge chunks from my mind, yet I can recall other things with perfect clarity, to the point where it’s terrifyingly eerie. So, call it “Brain Fog” or “Fibro Fog”, but whatever it is, I definitely feel it more often than not. Last night, at dinner, I momentarily tried to figure out where the piece of bread came from on my plate. I’d been eating not ten seconds before, but I drew an absolute blank staring at this small piece of bread, one of my absolute faves, because I couldn’t recall it being there. I catch myself mentally checking out, shutting down when I shouldn’t, and it’s a miserable feeling. Don’t ask me what I did this week because, unless I wrote it down, I haven’t the foggiest fucking clue! 😦

Before I forget, I want to discuss someone being attacked for suffering from Lyme Disease. I absolutely HATE IT when hundreds of people come out of the woodwork and accuse a fellow sufferer of an invisible illness of faking it “for attention”. As if! Yes, there are people who DO fake all kinds of illnesses, but this person is someone with integrity. She’s not creative enough to make this shit up, and she so desperately wants her old life back that there’s no way in hell she’d put herself through a “fake illness”. It’s not gaining her anything, being sick, so for people to think that and make their accusations public pisses me off.

Lyme Disease is a complicated son of a bitch. It can happen to ANY of us at ANY given time, so only the ignorant are the ones wasting time judging. Lyme can lie dormant for YEARS and is one of the largest, growing epidemics in the world. If caught early, you can be treated with antibiotics and go about your life, but if the disease has been in your system for 10+ years, it is going to take its toll. Most people have no reason to be tested for it, but I’ve been tested for it on a regular basis since I was eight. So, I know precisely what I am talking about.

Instead of allowing fellow autoimmune sufferers to be bashed, we should be banding together in support of those who hurt the way we do. Being a good person means doing a little research sometimes. Being a good friend means you do the research when your friend is suffering, and by no means do you allow others to denounce their pain and suffering. We all know that our symptoms can be co-morbid with other illnesses, it’s a fact, but the next time I hear someone disrespecting a fellow sufferer to the extent that this person has been attacked, I will seriously open up a can of whoop ass on those doing it Steve Austin stole that line from me back in the day, not the other way around. 😉

Now that that’s off my chest, the weekend is here, it’s freezing, there’s a little snow on the ground, and yet, it will be 70 degrees on Wednesday. I kid you not. I am already taking allergy meds, so I suspect this Spring might very well be the death of me, and really, I was hoping to just drown myself today around noon. 😦

Patient X was scheduled to undergo another procedure, but it has since been postponed indefinitely. Hopefully I will get to see him for Passover, if not sooner. I’m sending out prayers in advance to my best friend’s father, who is scheduled for heart surgery in a few weeks. Scary, scary shit. 😦

I am off to do wild and crazy things, like contemplate sleep (or watch the rest of The Originals, you’ll never know which! LOL.) and/or hunt down a cupcake.

Be good to one another. Until next time,

Brain Fog

2015-01-022015-01-03 Miss Poison Be You, Being Real, Believe In Yourself, Doubt, Musings, Negativity, Pieces Of Me, Poison In Lethal Doses, Power, Support, Talent, The Mind, Writing Anais Nin, Brain Fog, Doubt, Fibromyalgia Pain, Life, Migraines, Musings, Negativity, Pieces Of Me, Poison In Lethal Doses, Writing

It feels like a horrible Monday, the way my brain is fogged up and refusing to fire on all cylinders. No, I haven’t been drinking, but apparently having a holiday in the middle of the week has screwed me up, BIG TIME.

I did manage to get a lot of work done this morning. Considering I have a migraine that is coming and going, that’s astounding. I did have to remind myself not to edit this person’s work (When I edit, it’s probably because it’s necessary, but also because I am a fixer of words.), merely to critique it and give an honest opinion. That is going to prove VERY hard. I sat here for over an hour with my jaw damn near on the floor while I read.

I am professional. I adhere to very specific guidelines, but I am truly astounded by the idiocy submitted to me at times. It’s easy to miss a word here and there, to lose track of little things, but it’s another thing entirely to write for the sake of writing. It’s like listening to a person talk, except you’ve tuned them out after the first 100 words and now you’re staring at them in utter amazement that they haven’t noticed that you’re just not listening. When I space out, I often feel disconnected. For me, it’s not entirely dissimilar to an out-of-body experience. However, when I’m reading something that feels like someone is rambling for the sake of rambling, I stare at the screen and think “Did someone REALLY write this or is there a hidden camera here somewhere?” I’ve contemplated looking.

For today, I think the best thing to do is focus on my health. I’ve already done some work, far more than I originally intended to do, so tomorrow is another day, or later perhaps, if I feel like being masochistic.

I’m in excruciating pain from this migraine and the rest of me from the neck down to mid-thigh doesn’t feel so hot either. I’m disturbed that today is Friday, but will take the weekend to really rest (and work). Next week has its own battles, none of which I am looking forward to. However, my faith is strong and I believe everything will work itself out. Not because I’m being unrealistic, but because I have a very good sense of self and most of what I am attached to. Sometimes I think we’re trapped in the middle of someone else’s major life lesson, and while it doesn’t always feel good while we’re in it, it’s important to remember who you are and exactly what you are capable of.

I know many people teach their children that they can “be anything they want to be”. It wasn’t much different for me, however my mother never would have encouraged or supported anything short of talent. If I wasn’t good at something, she would say “Don’t quit your day job.” Not to be mean, but because she was a firm believer in my talents and did not believe in sugar-coating anything regarding her children.

I’ve heavily doubted and questioned a lot of my talent over the last year or so. Maybe I’ve had those issues deep inside my own head without even realizing it for far longer than I know. I’ve made myself sick from the doubt and unending questions in my mind. It’s a bit like being brainwashed, except you’ve done it with one negative moment where you allowed yourself not to fully be you. The second you allow a sliver of doubt in, it takes over.

I adamantly refuse to allow anything or anyone to tell me who I am. I refuse to be defined by other people’s beliefs or opinions. Ultimately I can refuse these things because I know who and what I am. At the beginning and end of each day, I am a fighter. There is great power in that, I just have to remember to allow the fog to clear.