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.

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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?! :/

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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.

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

7 Things You Need To Know Before Getting Botox For Migraine

7 Things You Need to Know Before Getting Botox for Migraine

Find a doctor with cranio-facial experience, as that is the key to getting the proper dosage and injections in the right spots.

From Skeptic To True Believer

From skeptic to true believer

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.