Friday, October 16, 2015

“I’m sorry. Headaches aren't fun, are they?”



DISCLAIMER (and I don't just say this because the post is long): There are lots of curses and capitalized words. Continue at your own risk.


Some of you have asked how I am doing, and in an attempt to not use my eyes and brain too much, I haven’t answered. I'm sorry if that has worried or offended people. I'm just doing what I can do. So I figured I’d type this up, send it out collectively, and I won’t have to answer over and over again (with the exception that I miraculously get better and actually CAN type individual responses. In which case, I would gladly do so.)

WARNING: some of you (if not most) will find this offensive. If you’re one of those people, then stop reading and don’t blame me for writing something that offends you.

Because, truthfully and to the core, I don’t care. I can’t anymore. I don’t have the capacity to, physically or mentally (as we all know they go hand in hand). I also don’t need hate from you, so don’t think it’s your job to help me “see the light.” I have enough self-hate as it is, and I definitely don’t need you to add to it. Like I said: it's not your job to redeem people from all the things they’re doing wrong or don’t agree on. Sometimes…just listen. Maybe, try taking what someone says as legitimate and genuine.


I have to get out my frustration. Right now I can’t talk. I can’t look at a screen for longer than a few seconds at a time (which means this is going to take me forever to type and edit), and I lack every single capability to use my brain for normal, functioning things. Even typing a 140-character tweet takes me a whole minute if I try grammar/spell-checking it in my current state. But this all has to be said, even if it takes me >2 hours to do it.

WARNING #2: some of you will not just find offense to my “horrible” attitude, but some of you will even think I’m seeking attention or complaining beyond what it necessary.

My response to that: fuck you.

Offended yet?

Maybe someday, when I’m myself again, I will regret writing this. But I don’t think so. Because I can honestly say I have never, in all my life, written something more purely honest than this. No pretending I’m better or more positive than I really am.

THIS, right here, is honest. It’s the exact state of mind I’m in at this moment. And I’m not going to hide it, or apologize for it.

Plus, I warned you, and I meant it: those who would be offended by this or judgmentally-judgy-judgy (and I guarantee there are more of you than I’m probably even guessing at this point—by some of my “friends” on Facebook), please, please just stop reading this. There doesn’t need to be anymore fuel to your hate and condemnation.

What is this about? Anyone who's been keeping up even remotely on my health recently probably knows.

So what’s it about? I WANT TO DIE.

Worried yet, worried for my state of mind? Please don't be; it comes with the territory.

This isn’t an attempt for attention, a warning of suicide (because let me assure you, it’s not that at all…so please, don’t go calling someone or putting me on watch or anything like that—I mean that; please don’t make it about that, or about you), and especially not a cry for help (unless, of course, you’re offering to give me a miracle cure, or put me out of my misery yourself; then I’d welcome the help).

This is simply an attempt to get out my most deepest feelings of loneliness, frustration, and suffering. I've been told in the past that using the word "suffering" is dramatic. It's why I have a complex about it and don't use it lightly. But, really, what better word is there for what I'm going through? You don't believe me, just hear me out a bit. Maybe with this letting-out-of-emotion, I will stop being able to sob on the floor in desperation or anger to God.

So, again, how am I?

I can honestly say that I have never been this bad off, physically, in my entire life. Not after I had my three kids, not when I’ve had the worst flu, not after my major lumbar surgery last summer—not ever this bad. No matter the opposition (and complex caused by that opposition) that will always try to tell me otherwise, I’ve always known, at least in the back of my mind, that I am one of the stronger human beings. I can't pretend I'm not anymore; I won't. Because that is simply not true, and that belief has ruined so much of my conviction, confidence, and otherwise. It's a conditioning, yes; but I know that with practice and time (and more therapy than I've been able to afford, probably), I can overcome that damaging persona that was never really there--put in my head by "you." You who still believe I'm weak--I'm sorry, but that is your problem--your false outlook--and I don't need you in my life, or my head anymore. I have a high pain tolerance (I had two children naturally, without meds, because I chose to). But this has. Wiped Me. Left me feeling like the most worthless, weakest person alive.

Again, before you just think I’m being dramatic, please, for the love of God, have this health condition for two days, and I guarantee you will feel the same desperation and defeat.

Have this for 8-9 days, like I have, and you too will be BEGGING from the floor (because you can’t get up) for God to take your life—if he truly loves you. As irrational of a thought as that is.


(Random insertion of EXTREME frustration: I juts got carried away with said frustration, slammed the keys, and ended up losing paragraphs of this.)


Have this for 9 days, while living alone and having no one to help “take care” of you, or even be able to walk across the room to get you something you need, and you will be sure that it’s everything you’ve ever deserved in your life.

Have this for 9 days and have to go a whole week without being able to take care of your kids and actually be with them, and you will wonder WHAT you ever did to deserve this Hell, regardless of you thinking in your last thought that you deserve this.

Have this for 9 days and when someone does try to help you, having them interrogate you about how much alcohol and coffee you’ve had, because they are suspicious and SURE you’ve brought this on yourself (note: I haven’t had an alcoholic beverage in over two weeks; I haven’t had a single cup of coffee since two days before this came on. Not sure why I am mentioning this, because it truly doesn’t matter, and I know I don't have a problem (unless you're Mormon, then I have a problem; I guess old habits of a lifetime of self-blame don’t wear easily. And after all, this is a honest post).

Have this for 9 days and have to miss 5 days of work because you simply have no choice…when you have never been in more dire of a financial state in your life (not even able to get gas), and again, you’re wondering how the timing could get ANY worse. (Again, note: the one day—yesterday—I tried working, for 3 hours, I had to stop in tears because this thing is affecting my ability to concentrate as well, and I literally, for the life of me, was getting every client mixed up and messing up their reports. This hasn’t happened to me the whole 8 months I have been at my job; not even when I was new. I have NEVER been so out of it in my life; not even while drugged. On prescribed narcotics; calm down!)

Have this migraine-beyond-migraines for 9 days and have people, even medical professionals (all of whom, I’m convinced, have never had a real migraine in their lives), refer to this as a “headache,” and you will go ballistic. People—I’m telling you right now—there is QUITE a fucking difference between a migraine and a headache. You want to offend, hurt, or make someone feel like less of a human being? Claim to someone who is deeply suffering from a migraine that they just “have a headache,” and you’ve now won the Asshole award. My paramedic (whom my sister called when I was too prideful to call myself—I love you, Cindi), trying to be witty, cute, and funny: “Well, I’d say, judging by the heating pad on your pillow, you have what we call a headache. Am I right?” Me: “NO. It’s a migraine, ASSFUCKINGHAT.”*

*What I WISH I would have said.

On that same line, have this for 9 days, be in a medical facility twice in 3 days, have doctors not only refer to it over and over again as a headache, AND claim they see no other medical evidence that it’s nothing more than that, and therefore refusing to do real tests that might point to other things, while you KNOW something isn’t right in your body—far from normal for a migraine—and you might fucking go insane. MIGHT.

Have this MIGRAINE for 9 days, when people who claim themselves nature-paths or nutritionists talking “down” to you by suggesting things you—a sufferer of migraines—surely NEVER considered. “Oh, honey. You need more this and that in your diet.”


Hate to break it to you, Savior-people, but anyone who suffers from migraines knows every natural and at-home remedy, and has, most likely, tried them. Also hate to break it to you with this, but if the ER’s special elixir of “migraine cocktail” won’t even help—if NOTHING can touch it, especially real medication prescribed FOR migraines, doesn’t help--it’s highly-fucking unlikely that a mineral or a cool pack on the neck will help. No, let me rephrase: It WON’T help. A headache, sure, possibly. But migraines are a chronic condition. Not some random headache. Someone who suffers from them would have had them time and time again, and they would have done their research. They would know what works and what doesn’t. Don’t—I repeat, DON’T—give out migraine advice if you’ve never experienced them yourself. Period. Instead, offer support. Help.

Lastly, on the 9 days thing, I know—to those who just don’t get it—that 8-9 days feels like little time, and very manageable. It’s a little over a week, for fuck’s sake.

But, let me tell you: even for me, who does occasionally suffer from migraines that, at the max, they've last only up to 4 days, 8-9 days is a large number. It’s a large number to be feeling such intense and unbearable pain in itself. But add that it’s not only long but at an intensity I’ve never felt before (I’d say I’m sure NO ONE has felt it at this intensity, and could believe it; but I’d never make that claim, because I’m not an asshole). This 8-9 days HAS. BEEN. AN. UTTERFUCKILICIOUS. NIGHTMARE. PERIOD. 

And…then add an ADDITIONAL PERIOD.

I guess that leads me to my closing comments—what it is, exactly, from which I’ve been suffering (maybe just for all you who have actually continued reading and need more convincing…or maybe I’m still judging myself too harshly and this convincing is just for myself). What I am experiencing:

  • Pain SO fucking intense, on my ENTIRE head (from forehead, eyes, behind the ears, back of the head, neck, and all the way down my spine) that I can’t get up. No, that’s not an exaggeration. Can’t get up is pretty accurate. It’s why I haven’t been able to work or take care of my kids. It’s why when they were here for two hours yesterday, I had to feel like the worst mom in the world, have them close my door while I lay in bed, and allow them to take care of themselves—AKA get into everything possible in my house. Because every. Single. Time I go from lying or sitting, to a standing position, I have to lean against a wall for at LEAST two minutes while the blood rushes to my head, makes it all pulsate (not just causing the sound of a swelling ocean, but making sound all together disappear and making me lose my hearing), making my body temperature rise about 20 degrees (maybe an exaggeration on that number) because of how hard I am FIGHTING to stay upright, and makes tears involuntarily spring to my eyes (but I have to be careful not to actually “cry” or “sob” though, since that movement and concentration would make me black out) while keeping every muscle in my face and body as lax as I can (which feels impossible, since I just want/need to scream until I die). Eventually, during a good moment, these episodes (did I mention it happens literally EVERY time I stand—even if I’ve been sitting for only 30 seconds and was standing before that?) last about only a minute. On days like today, it lasts over THREE minutes. When I do have to stand, to pee or whatever (which, quite honestly, hasn’t been happening much lately), I have to make sure to grab everything I may need in those next few hours or more and bring them back to my bed with me before I lie/sit back down and risk having to do that all over again too soon. Two nights ago, no matter how hard I tried, the pain won, and I blacked out, finding myself on the floor less than a minute later.
  • I can't move my head in any direction other straight ahead or slightly looking down, or make any sudden movements--even if it's to adjust a pillow under my neck, or to grab my meds off the nightstand. 
  • I am nauseated beyond belief. Which is why I have eaten nothing but small doses of applesauce and saltine crackers for the past 10 days (yes, this part of it began before the migraine pain even started). Because, guess what? Eat more than that (I have tried to force myself, trust me), and I’m puking up everything I just tried eating.
  • Dehydration. Bad. Even the one liter of fluid I got at the doctor, and the two liters I got at the ER two days later, didn’t fix that. Let’s just say peeing is few and far between. So when you say with an all-knowing smile on your face to “make sure you’re drinking enough fluids!” it, again, makes me want to flip you off. I’m doing. The. Best. I. Absolutely can. (Let’s just hope this actually helps me lose some weight—har har!)
  • Cloudy brain. And I mean CLOUDY. I never watch TV. Anyone who knows me knows that I simply can’t waste my time doing it. I have nothing against it—I wish I could. I’m just not one who can, knowing there are so many better things I could be doing with my time (football is an exception). Well, TV is all I’ve been able to use to help me pass the time lately. Without that background noise, and not being able to physically and mentally do ANYTHING else, I would die without some form of background noise. Family Guy. Simpsons. New Girl. Friends. You name it, it’s helped time pass that much less excruciatingly. Work, on the other hand…well, we talked about that. How I tried my damnedest to get three hours in, and failed miserably. Writing? No way brain function at that capacity would be possible right now. Like I said, brain clouds at the highest, most disorienting level I have ever had. Not even remembering simple words while explaining to my doctors what is happening.
  • Weak body, shaky muscles.
  • Unable to breathe.
  • Fever (in the most recent two days—ooh, look a NEW development in how my body is literally giving out on me!)
  • Not able to sleep. 8-9 days of nothing more than 20 mins here and 20 mins there. Two nights ago, I slept better than I had this whole time—a whopping 3 hours straight. Problem isn’t just the pain. It’s the inability to “sleep” in any position other than sitting straight up. Sometimes, if I’m lucky, I will be able to sleep for about 10 minutes on my left side. Why the side makes a difference, I don’t know. But never on my back, and never on my right side. Sitting straight up is all I have. Let me tell you (as I type with tears of utter misery and exhaustion), that it makes for excruciatingly long nights, and even longer 24-hours. I swear, these past 8-9 days has felt a month long.
  • NO sun. No light. The only time I’ve willingly stepped foot into the sun in the past 7 days is when I had to drive myself to the doctor (truly not sure how I did that, let alone survived; there is no way I could do that now), and when I had to have a friend take me to the ER two days later, followed by the store right after (because I was out of applesauce and saltines). Bless his heart for that. Otherwise, I can’t even look out the window when the sun is shining. Simply cannot.
  • I can’t do anything, really. I feel disabled (no cheap-shot on disabled people). It’s just the truth. There is no other way of saying that more accurately. I’d probably lie/sit here moaning at a constant rate if it didn’t hurt so much to do so.

There were two days I felt like I was having a breakthrough—two days I was convinced I had seen the worst if it and even told those I love that I thought I was now on the uphill. But then days like today happen. When I’ve taken five steps back and I wonder WHAT IN THE HELL I DID TO DESERVE THIS. Was everyone right, about how because I walked away from the Mormon church, I’m being punished—regardless of the fact that I am a better person now than I ever have been? Is it true that God really does go by what you preach from your mouth rather than the kind of person you are, and the kind of heart you have??

These are all things RAGING painfully in my mind, because as I’ve been sitting here twitching and bawling in misery and pain, I’ve been crying mercilessly to my Heavenly Father to please have pity on me. To please let me get back to my life with my beautiful children and to being able to hold a job so I can pay for simple things like toilet paper and gas. Begging. I know it’s possible. I’ve seen miracles before. So much that I even gave in to my ex-husband’s request to give me a blessing. I had faith. I had all the right things.

Yet I was worse the next day (today). So what does that mean? And please don’t tell me that it’s because the Lord will heal me in His own due time, when HE sees it’s right—when I’ve learned whatever it is I need to learn from this. Just spare me. I have heard these things my whole entire life—how we need to have faith anyway (on the rare off-chance our faith actually gets us what we need). How we are never supposed to question His motives. But right now, because I’m taking this opportunity to be honest in every way I can without calling people out by name, I can and will admit that I don’t get it. What’s the point of blessings when it’s completely hit and miss—in my experience, more miss than hit.

Don’t. Don’t judge. I have been more than faithful (religiously speaking) my entire life. Faith has always been one of my greatest strengths. I just have nothing left anymore. Maybe it’s a more realistic thinking. Or maybe I have just been pushed so far beyond what I am able, that I simply CAN’T view it that way anymore.

I know you all have good intentions, and people try helping in the ways they can. If you’ve made it this far in this post, then you have to know I mean it with all my heart, and that your “good intentions” ARE recognized. There just comes a point when good intentions, self-righteous attitude, judgment, preaching, and thinking you know more than a certain person about things or subjects, is not enough. I just need someone to care. That’s all. I need people to not turn a venting status on Facebook into their own debate and agenda. I said I fucking wanted to die. And it blew up. I guess this is where I FINALLY get through my thick head that people don’t always care about that, and that I simply shouldn’t let go of my feelings and frustration on social media, if I don’t want to be told WHAT to do, how to do it, what I’ve done wrong to get where I’m at, or that I’m just trying to get attention.

Cut that shit out, please. 

There are attention-seekers, and I am not one of them; never have been.

I just want to get better. That’s all. I DESPERATELY NEED to get better. And when did sharing that with friends who supposedly love you, and care about you, turn into an attention-getting scheme or a cry for being dramatic? I don’t have many people in my life I can count on anymore. To those of you I can, THANK YOU. It means everything to me. In the future I will keep my venting to you whom I mention, for the fear—No, knowledge, as has been proven time and time again—that anyone else will judge me or cringe when I am being “too open” with sensitive things on social media (which is a very common and wide-spread belief of anyone in my past life; though, really, I can’t understand why that is, and how anyone could be that insensitive as to believe that way. OH YEAH. I almost forgot that most religious--mainly LDS--people believe in suffering in silence). As though sharing your deepest feelings makes you a weak person.

Just a word of advice (now look, here I am trying to give advice to YOU; hypocrite much, Jen?): if you don’t understand what a person is dealing with or how bad it really is, don’t judge them by assuming you know. Care. Listen.

My next dilemma now is this: because I’m getting worse, what now? Is it normal for a migraine of this capacity to last this long (I’ve never heard of it myself)? Is there something more I should worry about, though I know I won’t get tested for anything else if I went back to the doctor (and let alone, can’t afford it)? I have truly never been so worried for my health and well-being before. Ever. Every day that goes on like this, I feel my body giving out in more ways. And THAT is no exaggeration. It’s happening. Right now, my mind is so bad off that I’m convinced I’m dying, or at least on my way there, since there’s no possible way I can get better with rest and nutrition, and that this is one big cycle that will kill me. I mean it when I say I have nothing left in me to go on.

^^^Those. Those are questions I want info and answers to (if it's normal for a migraine at this intensity and magnitude to last this long, etc.), if you have them. Because none of the doctors, nurses, and hospital staff had answers. This is something where someone's personal experience would come in handy.

So while I would never end my own life, I do, in all honesty, which an intruder would come in my home and end me right now. Not even the motivation of being my kids’ mother is taking that dire desperation away. And that is truly a first in my life. Because I’d make a better mother as a ghost than I would being “alive” right now.

I wish a healthcare professional would listen to me when I say I. Don’t. Feel. Right. That this is not just a “headache.” Tell me this is a normal extreme and length of time to be experiencing this, and I will continue to ride it out. Not happily, but I will.

Now, since four hours have passed since I wrote bits and pieces of this, and edited it once, I'm going to go pass out. I guess I should say veg out, since passing out isn't an option.

Oh, and stay tuned, sometime later next week (or sooner), for the post that will explain why HEMLOCK VEILS, and my career, are being killed.

Sunday, October 11, 2015

When Doctors Can't See Past Themselves

I just need to vent. Take that as your warning, I guess.

The venting is toward my body, but mostly toward doctors. More precisely, MY doctors. At Kaiser. Yeah, I'm calling Kaiser out. I'll get to that in a bit. 

I am so, so exhausted of struggling through pain. I've had to just "deal with it" since moving back to Colorado last December. Most the time, I can deal with it; I've learned how to deal with it over time, and accepted it as a part of my daily life. I suppose anyone who struggles with chronic pain has to reach that point. It took me two years to accept it. Honestly, that first year I got it, I never thought I would accept it. So that's definitely something.

But, holy shit, does it interfere with my life sometimes. Holy shit, does it take all my spoons.

Times when, like this weekend (and past week, really), EVERYTHING hits all at once. Because autoimmune disorders do that. Everything is affected by them. Just to list this weekend's specific problems... 

1. A migraine from the deep crevices of Satan's armpits (one of the worst and longest-lasting I've ever had, which gives me flu-like symptoms and has made it impossible to eat real food for almost an entire week). 

2. My residual back pain (again, worse than its been since my surgery last summer, for reasons I can't define). Lower back pain so bad that it hurts to lie down. It hurts to take every step. Which means finding a comfortable position is entirely impossible. 

3. Lastly, my fibromyalgia + autoimmune disorder pain....again (again), much worse than it usually is.

Individually, these things are bad enough. But put them all together, all at once and at a high magnitude, and I'm in pure Hell. I lose sleep. I can't eat. Last night, for example, I was awake for 5 hours straight in the middle of the night, with all these things raging at once, wishing someone would just put me out of my misery. Switching my heating pad and hot rice pack back and forth between my head, the back of my neck, my back, and my wrists and hands (and also wishing that I had a full-body heat source, since I couldn't affectively reduce pain on all areas at once). Moaning and groaning and cringing as my body twitched with every bout of pain. Everywhere. 

In these times, sleep is impossible. And the lack of sleep, of course, only makes these symptoms worse, thus making it a seemingly endless cycle of misery. 

I hate my body. 

What makes certain weeks/days worse than others, I wish I knew. If I could determine what things made all this pain flare up, I would, possibly, be able to have a better control on it. But it's all one random, annoying mystery, as anyone who suffers from chronic pain can tell you. 

The point of this rant? Why am I so irritated with my doctors? Because they don't care. They care more about their regulations. They will not prescribe pain meds. My regular family doctor says, by the rules, she isn't allowed to. My rheumatologist there says the same thing. So if my rheumatologist can't, then WHO CAN? What is the point of these doctors even existing? In Arizona, my regular family doctor could prescribe whatever he wanted. Whether it's because he understood, or wasn't bound by gigantic company regulations, I don't know. But he did care. At Kaiser, you're under one massive corporation's rules. 

I have no way of monitoring my pain. They ask if I've thought of IBU Profin. And I want to scream, if it wouldn't add to the migraine so much. Any sufferer of chronic pain knows (I know I keep using that phrase) that IBU Profin does NOTHING. 

In frustration, I asked my regular doc at Kaiser a few months ago what she recommended for pain then, if they couldn't give me anything. You know what she said? Exercise. Meditation. Rest. And of course, IBU Profin. It left me feeling like they view anyone with pain there as some sort of drug seeker. Everything is regulated. And it was one of many times I left their feeling utterly defeated.

Which lead me to brave my next question for her--one I was so scared to DEATH to ask, but one I had to ask in my mad desperation. I'll get to that in a second.

About a month before I asked her this question, after having already tried to get some form of pain management before that, I decided to try cannabis. I live in Colorado, after all; the stuff can be bought recreationally at a dispensary. So I tried it. I bought some edibles I would save for bad pain days, when nothing else worked.

And guess what? I've never had anything relieve my pain so well--migraine, fibro, back, and all. I was amazed. For the couple-few hours it was in my system, I FINALLY had relief.

But cannabis is expensive. And when you are living penny to penny, it adds up. I had heard of many other people, not just in Colorado, who have had their own doctors prescribe this as a form of pain relief. The results are impossible to ignore. 



This brings me back to my brave question. I say brave because even though I'm in Colorado, and prescribing this for pain, nausea, and anxiety is common practice, I have major issues with worrying what others will think of me. I have worried my whole life, because of my own insecurities as well as other factors, that I have to pretend I don't hurt or feel sick. That I have to tough things out so that I don't look weak to others. And that if I don't "tough things out," people will think I'm either lying, trying to get attention, or being weak. Just asking my doctor for any form of pain meds made me feel awful enough. Especially because of how much I hate narcotics and how they make me feel.  Part of me was even a bit relieved that they wouldn't give me any (they wouldn't even give so much as a simple Tramadol).

But the fact remains that there are just some days I can't make it through the pain. It effects my depression, anxiety, and everything else--again, like a pitiless cycle. Which affects my time with my children and those I love. It affects my daily work responsibilities--which I have to be on top of, mainly because I NEED these hours. I NEED an income, desperately. 

When the docs at Kaiser told me they couldn't prescribe any form of narcotic or opioid, and then when I asked what else they COULD prescribe and they told me there was nothing else and I would just have to deal with it, THAT'S when I knew I had to admit to her that for the past month, I'd been using small doses of cannabis to monitor my pain. I had to ask her...

So I did that. I admitted it to her, told her it was the only thing that gave me any relief. And I asked her if there was any way she could PRESCRIBE me some, so I could actually afford it.

The fears I felt at having to ask her this were, of course, verified. Again, my pain was not validated. Her response? She shook her head and got panicky. She told me she would never prescribe cannabis to any of her patients...because she doesn't BELIEVE in its benefits. 

She doesn't believe in its benefits.

Even though the results are a given. Even though it is much safer than any drug on the market, especially narcotics. 

But she reiterated to me how harmful it was (she is a brand-new, young doctor, out of NY), and told me I should never use it again. Yet, she couldn't provide me with any solid facts or studies proving her claim.

Once again--more than before--I left feeling defeated and weak, with a stamp across my back saying DRUGGIE.

That's how I felt anyway. So for the past couple months, I have had to go through life with nothing but IBU Profin.

And a supply of cannabis on hand.

And every time I use it, I feel guilty and wretched. 

I hate my doctors. 

This is my frustration. I have to suffer through nights of flared up EVERYTHING. And I have no answers. No one takes me seriously. 

I not only feel weak, but I feel alone. 

I miss my old doctors in Arizona. 

But at least I can be grateful for this state I live in, and how available cannabis is (though expensive) to those of us who have doctors too ignorant and insensitive to our issues. 

End of rant.