Shutting Down

yourbody
In more ways than one.

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.

femalefriendships

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,

L

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

admitit

A Case of Migraine Triggerphobia?

A Case of Migraine Triggerphobia?

Life Can Be Very Difficult At Times

“The truth is that life can be very difficult at times. There can be a lot of pressure to keep it all together, to be smart and beautiful, to be so good and perfect. But sometimes we don’t have it together at all. Sometimes we make mistakes. Sometimes we don’t feel good or look our best. Sometimes things are not good at all, and we feel miserable, lonely, or depressed. If you have lost your way and feel down, that feeling belongs to you. If you feel miserable — it’s yours, and no one should take it away from you. It’s important to feel your feelings. Maybe things honestly aren’t very good at all right now. Maybe you have good reason to be depressed, and the last thing you need is someone telling you to be happy. But one thing you do need is at least the respect from others to let you sit with your valid feelings. You don’t always need a cheerleader, just someone to simply be a friend by acknowledging where you actually are, and how you really feel. Real problems can’t be fixed with a motivational poster, a cute quote, or a pat on the back. When you are in your pain, it does not matter how intrinsically special you are, or how beautiful life is, or how precious each moment is — if you don’t accept and respect your suffering, it isn’t going anywhere. Submit to your pain; don’t suppress your pain. If you can sit with your pain, listen to your pain and respect your pain — in time you will move through your pain.” —Bryant McGill

On Acceptance: Productivity and Pain

On Acceptance: Productivity and Pain

Sad and In Pain– The Link Between Migraine and Depression

Sad and in Pain – The Link Between Migraine and Depression

Unusual Migraine Symptoms

Unusual Migraine Symptoms: Earaches, Ear Pain

<Raises hand.>

I do get this type of pain sometimes, and it’s particularly harsh. I have yet to find true relief from it.

There Is An Intelligent Healing Process…

“There is an intelligent healing process inside of you that knows how to absorb pain and transform it into wisdom. But to heal, you have to give yourself to the pain. You cannot avoid facing yourself your whole life. If you avoid your truthful emotions and pain you will implode and contract into a diminished and unfeeling state. Growth and empowerment require reflection and facing the frightening, ugly, hard and unbearable reality. People are often clever masters at fooling themselves and not seeing the obvious right in front of them. One of the fastest ways to move through your pain is to get a grip on reality. Real transformation requires real honesty. If you want to move forward — get real with yourself!”

-Bryant McGill

Never Underestimate The Pain

thepainofaperson

My physical, mental, & emotional agony trump a lot of other things at the moment. I’m, quite possibly, not clear-headed enough to write this properly, so please, bear with me. I’ll correct anything that I post that needs to be fixed later on.

I sit here terribly sleep-deprived, covered in varying degrees of bruises (some are healing, some are fresh), and my physical pain is worse than I ever imagined possible. And yet, none of it compares to what’s going on inside my head. 😦 For the past week, I have been pushed way beyond my limits and comfort zone. On the plus side; I’ve walked away from some very negative things that were causing me severe physical, mental, and emotional illness that I wasn’t even aware was happening until that final step away, when I took my first clean, stress-free breath and realized I hadn’t felt free in years. On the downside; the move I was trying to put off in order to take care of Patient X  until he is fully healed is coming up sooner than I thought possible.

As of this past Monday, 95% of my stuff is in storage. My temporary “safe place” is a hotel; the only pet-friendly one I could find. The room is fantastic, but the walls are closing in on me. Again, I’m stressed and sleep-deprived. This morning I felt so weak, I went back to sleep, something I’m trying in earnest NOT to do because it exacerbates my insomnia.

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Patient X’s first post-op appointment went surprisingly well. He is healing properly, mostly due to the fact that I’m OCD and constantly repeating myself so that he’ll listen at least one time out of ten. Unfortunately, his “young pain receptors” are having trouble with the really painful aspects of such a complicated and delicate surgery, so his pain medication was changed at yesterday’s appointment. I’m not thrilled with the choice, but so far, it is working.

I went to three different pharmacies for this drug and when I finally found one willing to fill it, they damn near told me to go back to Philly and fill it there. It is the store’s policy that certain drugs be filled “closer to the prescribing hospital”, as if people have a choice as to where they’re operated on or not! They were willing to do it this time because I’d called in advance, which apparently made them nervous (I think they called security several times, an absolute FIRST, and I’m a pain patient, so I was floored.). I’m not about to apologize for calling with a legitimate question. Lord knows I showed up less than ten minutes after calling with the script, the patient, and his driver’s license to prove it wasn’t being sold on the street. They weren’t going to fill it until they realized he’s A) wearing a Life Vest and B) talked with him about why it was prescribed. Not cool Walgreens, not cool AT ALL, especially in light of the medication you filled without batting an eye for several patients who showed up after me, one of which is something I feel should be outlawed, but I’m not judging the fact that people need it.

Walmart & Target: you should both carry this drug that I desperately needed to acquire immediately, even if only in small quantities. Post-op patients need access to pain medicine that their surgeons prescribe. It’s completely unacceptable to tell them you can order it “in a week”. What are they supposed to do in that week? Hang around with a thumb up their ass?! NO ONE should be forced to suffer because you’ve decided not to carry medication legally prescribed by a physician. By doing shit like that, you’re trying to override a doctor’s right to prescribe and you don’t have the authority to do so. I was so annoyed by the time the medication was paid for that I damn near flipped my lid, and I can only partially blame that on low blood sugar.

fineline

Sunday is “moving day”. Some of my clothes & electronics, Cat, Kitten, and I are moving nearly five hours up north. Life as I know it is changing drastically, and I am not happy about the “rug pulled out from beneath my feet” feeling. Yes, I will adapt and yes, I will adjust. I will pull myself together and dust myself off over these next few weeks/months, mainly because stress can do horrible things to the body, mind, and soul. Someone told me on Monday that if I don’t take care of myself, I could do irreparable damage. She herself was so stressed around this time last year that she had to re-learn how to walk. I don’t want to reach that level of stress, so I need to get on the self-care diet of putting myself first for a few hours every single day.

Once I move, there will be a period of time where I will have to back-date things I write for this platform because I am not 100% sure when I’ll have Internet access, however, things will be written & posted as soon as humanly possible. Let’s hope the wait isn’t too long, lest I lose my marbles. There is such a thing as “too much silence” after a big move. The only books I have are on my Kindle Fire (every book I own is sadly, in storage. My poor babies!), and all of my music is packed, so I will be living off of what’s saved on my laptop and phone until I’m back for good. You simply never know when I will need to listen to Taylor Swift on a loop and cry.

I will miss all of you during “the dark period”, but know that I’ll be back the second the technician plugs everything in. I’ll be in touch before I leave. Be sure to check my Twitter feed and for those that need to know, my cell # and e-mail address will not be changing.

Laters, peeps!

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