Insomnia & Painsomnia: A Wicked Combination

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Whenever there’s something stressful going on in my life, it often affects my sleep, thus turning me into a shadow of my former self. Insomniac Lisa and Painsomnia Lisa are two very different beasts from the person I am when I’m able to prioritize sleep, and actually get into bed each night at a decent hour. I’m never 100% pain-free, but sleep is a crucial part of how my body recovers from what I do to it each day. I have worked my ass off this past month and lost roughly 20 pounds, somehow managing to strengthen my upper back muscles in the process.

Unfortunately for the past month, my sleep has been insanely erratic. First it was major moving stress, liable to affect even the calmest person in the world, of which I openly admit is not me. Then it was my brother’s pre-hospitalization health, closely followed by getting the phone call that he would need open-heart surgery or a transplant. It’s normal to have things like that affect you on many levels health-wise. Let’s face facts: No one expects someone young to be told that their heart is at 11% capacity. An entire team of doctors and surgeons and two different hospitals told him he was 10-15 years too early for such a severe issue. All of this crap has been screwing with me day and night and thus far, nothing I’ve done is helping. To add insult to injury, I have had a migraine since the day before Thanksgiving. I currently feel as if my head is in its very own torture chamber, taking my body along for the ride. 😦

When my brother was first released from the hospital, my sleep schedule had already shifted due to late-night texting and phone calls when he was still hospitalized and feeling lonely late at night, before his final dose of pain meds took over. There were many times I had to suggest he watch something on TV (“It’s almost 10 PM, here are three shows you can watch tonight. I have GOT to get some sleep!”), and then mute the ringer on my phone as opposed to allowing it to vibrate, so I could go to bed without the phone buzzing for hours. Now he’s here 24/7, and he’s driving me insane.

He’s not doing anything in particular to make me crazy (though I wish he’d remember that his legs are fine and he can get up and pour his own damn drinks!), he just happens to be in my personal space, and I crave privacy and silence. He’s mortified that I disinfected the remote, but since I don’t want him getting sick and he’s using it and I’m using it as well, I figured it was a wise decision. It is cold & flu season and while he is currently not in contact with other people several days a week, I am, and that can pose a problem for him if I bring something into the house that I did not leave with.

The other night he fell asleep while I was talking to him (I wasn’t boring him, he was simply in a lot of pain.). It was super early, but I felt that was the perfect time to cover him with a few extra blankets (It’s cold here most nights, and even when it’s not, he’s complaining that he’s cold.), and sneak off into the silence that is my normal routine. Alas, he got about three hours of sleep and I was wide awake. The second I thought about going to sleep, he was moaning in pain and when I checked on him, he was messaging someone on his tablet, with the TV on lighting up three rooms.

After a highly stressful week, I was finally in bed at a decent hour last night. As soon as I’d dispensed the last pain pill of the day, my head was on the pillow. Unfortunately, the previously aforementioned migraine decided to kick things up a notch and a little after 2:00 a.m., I woke up in unimaginable pain. I have no idea how I am attempting to type this, much less see.

My first line of defense is to attempt to get some caffeine into my system. It’s the only thing I haven’t sought out or used to treat this particular pain level, when it would normally be something I thought about a bit more closely. No, last night I was too far gone, so I took something less targeted that, as a last resort, often helps. Clearly it only helped part of me. 😦 So, I am nursing caffeinated tea and I took two Excedrin Tension Headache capsules. Not because I have a tension headache as opposed to a migraine, I know the difference, but because sometimes that combination works for me and nips the migraine in the bud. It’s not a permanent solution, but nothing really is. If it doesn’t start working in an hour or so, I will take a third.

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It astounds people that I have managed to learn how to work through some of my worst migraines, or that I put myself into the head space to focus on healing one. I look at it this way: I am not going out and triggering the headache to be any worse than it already is. I am home, I’m safe, I can control the environment (noise level, light, temperature), and I know not to move around too much, but can I sit at a darkened laptop screen and talk about it? Sometimes, yes. That doesn’t diminish the intensity of the migraine, it does not mean I don’t suffer from migraines (three neurologists and two other doctors are all in agreement that I suffer from migraines. They have gotten worse since my first diagnosis, so there’s nothing else it could be. Everything else has been ruled out.), and it also doesn’t mean it’s “just a headache”. On occasion, like most sufferers, I will get a dull headache. Unfortunately, dull can go to extremes pretty quickly, so I take all headache forms seriously. I don’t walk around denouncing other people’s pain either. If a person says they have a headache, but quickly says “I don’t get migraines like you do.”, I still wouldn’t tell them it was “no big deal”. Pain is pain. No one likes it and for those of us that endure it 24/7, I have seen people empathize with others openly, and I have also seen people blow off the pain of others because they somehow feel it is their right in life to be the one person on the planet who has it far worse than the rest of us. Sorry, but that couldn’t possibly be true, or you’d be dead. What may be indeed true is that everyone’s threshold for pain is different. In fact, I know this to be true.

In studies, it has been determined that women tolerate pain differently from their male counterparts. Not better, not worse, just different. Taking into consideration that the female body can push out a human-being during the process of giving birth, that’s not an immense surprise to me.

All of my heavily tattooed male friends had their jaws on the floor when I sat through my first four tattoos and described the pain as “No worse than a cat scratch.” You see, I chose a spot that most of them found to be extremely painful. They all told me to put my ink somewhere else, that the pain would be too much for me to endure, especially considering I suffer from Fibromyalgia, but I’d consulted with several artists who, like me, believed that my first tattoo should be someplace easily covered up with clothing. However, never to do things the simple way, I got my first four all at the same time. I wouldn’t even rate that a one on my personal pain scale. I’ve had more painful piercings.

As many of you also suffer from migraines, has anyone gotten a Daith piercing to try to combat them? Compared to all the medication, a myriad of supplements that may or may not be useful to the individual, various treatment methods, Botox, acupuncture, etc., the piercing itself, depending on where one goes, is between $50-$100. I am being told that it works for 50% of the people who get it, but I am also being told the relief is temporary, though some people are reporting themselves migraine-free 3-7 years post-piercing. I have decided to try acupuncture for a year to see if that spot along either of my ears responds to treatment. My insurance covers it, which is rare, so I am going to take the opportunity to use it first. I’m not sure I need another hole in my head, but I’d be interested in hearing whether or not the piercing has helped anyone. If you’re considering getting this particular piercing, please go somewhere highly reputable and have someone experienced do the piercing itself. The report of infection with this spot is very high, and I’d hate for anyone to go through that. I’ve only had three piercings in my life that gave me problems. Luckily they never got infected, but two of them bled for years if someone hugged me too hard, and the third still gives me problems on occasion (The fact that I share the piercing with a highly toxic person is probably why… I’m a big believer in energy. Sometimes we are healthier overall without certain people in our lives.). While most piercings are mainly decorative, there is no medical or scientific evidence that a Daith piercing is a cure for migraines, so don’t read into all of the Pinterest and Instagram “science”. Those are exclusively individual experiences, most of which are brand new. There’s no way of knowing what the long-term effects may be. For many, it is worth it for temporary relief. I’d rather explore a few additional options first.

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Are there any alternative treatment methods that work best for your migraines? If so, what are they?

The day insomnia can be cured in any way, shape, or form, I will be on a line for that! Right next to the line for the great Fibro/Chronic Pain cure. Here’s hoping we see it in this lifetime.

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

There Are Things I Want You To Know, Friend Without Migraine

http://migraine.com/blog/there-are-things-i-want-you-to-know-friend-without-migraine/

Having just started hour 63 into a migraine, I felt this was extremely apropos to share.

I often have to excuse myself into dark rooms so I can be sick in complete silence, or tell people I will call them back halfway through a conversation. Sometimes I don’t return a call for a week, or longer. That might seem rude to some, but in my mind, it’s a fact that I am actually sick and then recovering from being sick.

I am 100% “guilty” of wearing “JLo” sunglasses indoors (My brother often asks if I’m a Kardashian.) and in the dark of night to avoid bright lights, especially the fancier ones on late-model cars, which often make me ill. Hell, I wear them all winter when snow-blind is murderous to me, or when an extremely bright and/or cloudy day makes me nauseous.

I am hyper-sensitive to sound. You can whisper five rooms away from me, and if your tone is loud enough, it will still sound like a train inside my skull. Sometimes if Cat or Kitten are comforting me and their purrs are too loud, it will make a migraine so much wore. And yet, I watch NCAA basketball, hockey, NASCAR, baseball, and football with the sound often turned up. There’s no rhyme or reason to it. Some sound triggers, others do not.

I avoid crowds and noise like the plague. But I don’t avoid my friends or avoid spending time with them when I am able.

Struggling

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It is the early morning hours of Thanksgiving Day here in the States. After spending hours preparing stuffing yesterday (which I highly suspect might suck today), I ended up with a highly stressful day which resulted in a migraine. That then turned into insomnia, which is the only reason I am awake at such an hour. Turns out, Patient X is not the only one in pain. 😦 Poor kid.

Lucky for him, he has a sister/maid who will go back to the hospital tomorrow to pick up a prescription and take it to the pharmacy on Black Friday, a day I avoid like the fucking plague because of the insanity that ensues, all because his doctor did not see fit to prescribe the appropriate amount of pain medication upon discharge. I thought it was an incredibly odd number seeing as how he’s supposed to take twelve pills a day until he’s healed enough to not be in such severe pain. He is healing, the swelling and bruising are almost fully gone, but he’s still in an incredible amount of pain. I couldn’t stand by as if it weren’t happened as the pills diminished.

I realize there are always pre-holiday emergencies, but it shouldn’t take a doctor’s office nearly twelve hours to return two phone calls where the words “pain management” are used. I find that unacceptable.

Moreover, not being able to call a prescription in to the pharmacy in an emergency simply because it is a controlled substance, even if it means faxing a hard copy from your office or sending the hard copy via FedEx, is a major time and energy drain on caregivers. I realize doctors and PAs are busy covering their own asses on this shit, that patients do NOT come first, but it makes me angry that my brother is in severe pain and that I, in my agony, have no choice but to schlep somewhere I don’t want to be in order to get the appropriate medication for him. It should have been done correctly the first time, except now, I am going to be fully present and since his voice still isn’t better, they’re going to have to put up with mine, and oh, how loud can I go?!

The physician’s assistant was the epitome of rude, dismissive, and unprofessional (I’d like to think she’s just stupid and/or had a stressful day that she would have preferred to be spending somewhere else with family, but I was then informed that she’s always like that, so I knew it wasn’t simply my perception.) and proceeded to lecture me on post-op appointment scheduling. Excuse me; I’m NOT his secretary. I was not handed the discharge papers, so outside of dispensing medication and doing a plethora of other things that contribute to my misery, I am also supposed to be a mind-reader. News flash: There’s no such thing as mind-readers. Also, the job of physician’s assistant to a surgeon is basically glorified prescription pad, especially when you don’t know how to communicate with people as if they’re human-beings. Instead of wasting time acquiring healthcare experience before entering the three year program, I strongly suggest going to medical school and then try giving me attitude. I get to say this because it’s the truth. If you happen to be a PA and you’re reading this, I can only hope you treat people the way you’d want to be treated and don’t hang up on people mid-sentence. When you work with the public in any form, it is crucial to be courteous and respectful. For the record, I said nothing to warrant the ‘tude. If anything, I was overly polite and respectful. I won’t make that mistake again.

Is it convenient that they only see patients on Tuesdays? No. Instead of being able to enjoy some semblance of a holiday weekend this snit tells me to “call on Friday to get him into the office on the 1st”. Because apparently, Lisa has no life of her own and can drop everything on Tuesday so as to miss her own doctor’s appointment. I would like to know precisely when I entered a life of servitude. I wonder if there’s a uniform…

At this point I can only assume I am over-tired, hungry, feeling the effects of the Full Moon (If anyone else saw it rise last night, was it uncharacteristically enormous?), and/or in desperate need of hitting something. It might very well be a combination of all of the above. I can deal with that because it’s honest.

However, to add insult to injury, Patient X is running a fever and might very well need to return to the hospital tomorrow to be certain he does not have another post-op infection. If he does have another infection (which would be lucky number three), I will be on the 10 o’clock news in the Philadelphia area demanding that this hospital be investigated.

I wish I were able to set aside real life and focus solely on fiction (it’s a far better world on paper, as is often the case), but sometimes a writer has to be supremely real and not gloss the serious shit over. I may not currently be writing about NaNoWriMo, WIP’s, my experience editing this or that, or spewing nonsense, but at the beginning and end, I’m going to be real. I’d rather be respected for that side of me than have someone fuss over something completely unimportant.

There’s no rest for the wicked. Only the good die young, so I’m going to be here forever!

Wishing everyone stateside & all members of our Armed Forces a Happy Thanksgiving. To everyone else in this world; have an amazing Thursday where your priorities in life supersede all the bullshit.

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

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The Stroke-Like Experience

http://www.thedailymigraine.com/blog/2014/4/21/hemiplegic-migraines-stroke-like-headaches?rq=hemiplegic

Until someone mentioned this particular type of migraine to me, I’d never heard of them. I experience, on occasion, temporary paralysis completely unrelated to my migraines, which makes me wonder if it’s actually related without my knowledge. Yet another question for the new neurologist.

 

My Apologies

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Hi everyone! I know this isn’t a typical visiting experience at the moment, but I assure you I am doing my best.

When you’re caring for a post-op heart patient, every single day blends into the one before. I likely wouldn’t know it was Monday if I hadn’t intentionally bypassed Friday and Saturday’s normal routine of running errands, only to overdo it yesterday. I have spent a lot of time putting off every aspect of my life to dispense medication at regular intervals, to pour drinks (apparently I close everything very tightly, who knew?), and coax Patient X to eat a few times a day. These may seem like simple tasks, and they are, but if I leave the room for 45 minutes, sometimes less, I hear a tiny voice asking “Are you hiding from me? Am I making you sick?” That’s if I listen for it.

The fact of the matter is: I like silence and privacy. In fact, I crave these things. I don’t like being up ’til 3:00 a.m. unless it is my choice to do so. I don’t like sitting on the couch for 4-8 hours a day in order to keep someone entertained, because while the TV is clearly on in order to “entertain”, I can’t watch anything I truly want to see (I spent an hour in my room late Saturday night watching an episode of a show that ends in a few weeks because I can’t do so downstairs; some asshole didn’t want to see it and despite the fact that it’s my remote, it’s not worth it.). I find myself looking down at my phone a LOT, and no matter what I do to try to be in bed by 10:30 each night, I cannot sleep.

If you have any experience with a cardiac life-saving device called “Life Vest”, you know that this device can go off for any reason, even while changing the battery. Thursday morning the piercing sound threw me out of bed in its utter alarm, and I went flying down the stairs to make sure he was alive and conscious. He later told me I shouldn’t have panicked; the device has a 100% success rate at reviving someone if anything should go wrong. It’s intended purpose is to shock you back to life if need be, and it can probably be heard down the street. Mind you, from the second they put it on him, he has complained that it’s the equivalent of a “male bra”. It does sort of look like a sports bra and it looks uncomfortable because there’s so much to it, so I’ve had to listen to it go off several times over the last week. I tried sleeping through it Friday morning, as it was still dark. Saturday it went off in the early evening hours, but it was still annoying as all hell to hear the sound out of nowhere. Not as annoying as someone dying in my presence (No thanks, I’ll pass.), but it’s simply that noise itself does not agree with this chronic sufferer of migraines.

Certain types of noise are triggers and unfortunately, I never know what will cause a migraine. I only recently switched up my medication, but I did have a very long stretch over the last few weeks where one migraine lasted over a week. I had no choice but to ride it out. 😦

Today, I hurt from my neck to my toes. There’s not a part of my body that doesn’t feel bruised and battered. Okay, there are a few parts that are okay, but that’s about it.

Thanksgiving in the U.S. is this Thursday. In my last-minute prep attempt, I decided what to make and bought everything yesterday. I am grateful that no one in their right mind thinks it’s acceptable for me to make an entire turkey for two people. I cannot fathom tackling that at the moment. Every turkey I so much as glanced at was over 20 pounds, but since they were frozen solid on top of that, who knows how much they actually weighed. I found something small that will fit the bill. I don’t expect it to last more than two days, which is perfect. Wednesday I will make the stuffing in advance (Let’s face it, I will be eating stuffing Wednesday night. I am addicted.) so that I don’t have to cook for hours on Thursday. Patient X is on a little-to-no salt, low-fat diet. I’ve already broken multiple health rules in order to get him to eat. I’m making a small amount for him with as little sodium as possible. He has told me for nearly a week now that everything I’ve made is “full of flavor”. Apparently that is the component missing in all hospital food. :/ I can safely make sure that the rest of the stuffing actually tastes like something though (Yay!). I’m contemplating a citrus base for the main course. If only I had known in advance that I’d have a sudden craving for mashed potatoes, I would have also put that into consideration because apparently this is a carb kind of week. I still might make them, at the last-minute, providing I have a medication run to use as an “excuse” to do it. As things stand now, I might very well need to get another pie too. While completely unnecessary, it does make Patient X happy. Personally I don’t want vegetables made into pie, but perhaps that’s the American in me. Pie should be something enjoyable if you’re going to have it at all.

I am exhausted, in a lot of pain, caring for someone I normally can’t tolerate for more than short periods of time, and I still have my real life going on amidst all that. I’ve shelved as much as I can for the remainder of the year, but there is still much to do. The last thing I can even bother to think about at the moment are the truly stupid things in life. Wow, that statement covers so much…perhaps one day I will write about it. Hell, I’m lucky I remembered to pay my bills this month with all that’s going on! 😦

I hate the holiday season. It is a constant reminder that I am alone in this world, that my family is gone, and that those who are still alive (minus a few people) are horrible human-beings.

Despite amazing friends and loved ones, despite the adorable sweetness of Cat and Kitten, the holidays suck for me. I did get some nice gifts in advance of Chanukah (Shout out to my awesome Aunt.) and two belated birthday gifts (Again, my Aunt, but also a fabulous necklace from Sweet Blossom Gifts that I adore. If you’re going to be shopping on-line this year and you want something personalized and unique, I highly recommend them. They have everything from coffee mugs and pillows to jewelry. I can say for a fact that the jewelry is stunning in person and their prices are very reasonable.) that were such a lovely surprise (If you know the name of one of my favorite stores, you know I will be hitting up the post-holiday sale.), but I won’t be gift-giving this year. Things are simply too stressful and I have absolutely no time to do it. I barely know my name, the last place I need to be is a store. I also lack the desire to do anything for anyone over the age of five. Everyone knows they’re in my heart and that I am there for them 24/7. They don’t need expensive gifts to remind them of that fact. Sometimes, people truly just want to be thought of in a positive way. I’d rather someone send me a card and tell me something of value as opposed to forcing themselves into stores and not taking the time to enjoy the season itself. Those are precious moments. Actions are just as important as words.

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I am trying, with all of my might, to get through the remainder of the year with my head firmly on my shoulders. Patient X has a long road to recovery (If one more person tells me he will be chopping tress down in six months, I will hit them. For starters, he’s never chopped a tree in his life, so I highly doubt he’s going to take that up once he’s healed.) and while he is indeed healing (there’s been remarkable improvement this week), he is also weak and will definitely require physical therapy. His vocal cords are still pretty bad, but hopefully I will know more after his first post-op appointment after Thanksgiving. The fact that I’ll be able to force him off of my couch and into the fresh air, albeit cold, for several hours almost makes me giddy. The not so giddy part is that I do have to go with him, otherwise I won’t know precisely what the doctor says. Let’s just say that the anesthesia that was used has some side effects and there are parts of his memory that simply aren’t there at the moment, which is quite scary for me to hear, but scarier for him because he knows he should know these things and keeps wondering why his brain is foggy and he can’t form coherent thoughts or access his memories. If ever I find that anesthesiologist, I might have to sit him down and explain certain things to him in thinly veiled threats. It wouldn’t be the first time I’ve had to do it and I’m certain it won’t be the last.

If you’re celebrating this week, I wish you a wonderful, happy, and safe holiday. If you’re not, I wish you were coming to my house so I could cook for you. 😉

Be safe on Black Friday. It’s a fucking jungle of psychosis fueled by insane amounts of caffeine. I will be as far away from the madness as possible. Of course, I will still have someone hogging my TV and eating my food. If you see a good-looking man being auctioned off on eBay, I assure you I’m the seller. LOL.

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

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This has been me, for nearly a month. I’m not 100% sure what I’m even buying any more.

Cause Of Migraine Linked To Chemical Imbalance

http://m.dailytelegraph.com.au/newslocal/inner-west/cause-of-migraine-linked-to-chemical-imbalance-new-research-shows/story-fngr8h4f-1227571398733

Let’s be frank; not everyone who sufferers from migraines has a chemical imbalance and not everyone with a chemical imbalance suffers from migraines. Since this if often the first thing a person gets tested for by their neurologist, I feel that a lot depends on a doctor’s approach.

I’ve been with my neurologist for 15 years. He has tested me for every possible thing to try to figure how why my migraines are so severe at times, and each time he has to say that, while not typical, as I generally don’t have migraine with aura (I have noticed that this has changed over the past three years.), I do indeed suffer from chronic migraines. For me, it is both genetic and related to concussion history. However, migraines were the first Fibromyalgia symptom to surface, so it is not uncommon for me to meet people who have migraines and some form of Chronic Pain. My doctor suspects it may go hand-in-hand for many of us, but he’d never say it happens to everyone.