Ellen’s Little Helper.

 

” You washed away my sorrows, saved me from myself

You washed away my troubles, laid them on the shelf

Your love flowed like mercy running through my veins

From the first taste you held me, pleasuring my pain…”

“Whiskey Angel”, the Black Lilies

 

My last blog was accompanied by Ursus, brewed by Greenbush. Well, this time I am sitting IN the brewery…chased here presumably by cabin fever, and this is a cool place to be as the snow flies. Great beer, food, staff, and they have Wi-Fi. I am sipping “Apathy,” an oatmeal stout, and it is a fine fit for this blustery winter weather. The server has been doing a superior job of checking on me without hovering, a skill I appreciate because I have now been here longer than everyone who came in before me. Ah, well. I will make it worth her while before I leave.

I’m pretty sure anyone who has been following my blog knows its an understatement to say I like good beer. A lot. After all, it’s in my blog name and subtitle. I have my husband to thank for informing me about the many differences in style and taste. You may have guessed that he likes beer too. A lot. He throws down the super bitter kind though, so this is where we part ways with preference. We have had some great times, met incredible people, all while discovering brewpubs all over Michigan and beyond.

But let me tell you something you probably didn’t know.  After I toss back a velvety stout or a refreshing pale ale and start to notice its’ effects, it’s the one time that day I will feel the unrelenting ache and burn that plagues my upper body start to recede. Talk about liquid medicine. Ahhhh. It must be like a heroin addict releasing the needle, only I’m a hop junkie releasing the lovely yeast tincture. Bring. It. On.

I can feel some of you fretting already at the words above. What’s this? She’s like a heroin addict? No, not exactly. But I will tell you this: I have a good understanding about how that can happen. And I sympathize with users trying to find relief, even if the agony is inside their head. That’s real, too. I sympathize because I will try almost anything to dull the tiny shrapnel-like shards digging at my shoulders and neck non-stop, try anything to ease the thick fog my brain has taken residence in, try anything to cut through the fatigue that so often pals up permanently with pain. These things are most assuredly NOT in my head, although there are misguided people and dumb-ass doctors who would suggest it is so.

Now, I’m also not a complete fool. I know the dangers involved in “self-medicating.” I know the horrors alcoholism can wreak, the whole shebang. I also know from experience that any more than two of my favorite brews will bring the opposite effect of what I seek, so that’s where I draw the line. I have zero interest in entertaining blackout bingeing and vicious hangovers. It takes me 2 days to recover if I am not in bed by midnight, for God’s sake. And that’s with no drinking involved. It is the very rare occasion that I surpass my limits, but if it does happen I just blame my husband. Joking. Sort of.

I haven’t wasted time analyzing what it is about imbibing that makes my pain better.  It’s no mystery. Spirits have been popular since Jesus turned water into wine, even before. (This reminds me. If you haven’t seen the documentary “How Beer Saved The World”,  you should). I’m sure the anesthetic properties (hops!) as well as the relaxation factor that eases tension, each contribute to my enjoyment. Alcohol’s effects aren’t even as strong or as long lasting as advils and opioids, but beer is a hell of a lot more fun. Of course with every plus there’s always a pesky minus to be had, and this is no different. Among other things, those luscious suds do add unwanted layers to a belly and they’re also not a friend to your liver. However. Within the world of  stomach lining-eating, glaucoma risks and osteoporosis-causing side effects that I inhabit, these are more than tolerable. As my diabetic mom was so fond of saying to a carton of ice cream: “something’s gonna kill me. Might as well be you.”

The truth is, I don’t care.

I will very joyfully succumb to numbing nasty nerve receptors as opposed to facing “reality.” My reality is that I have fibromyalgia-like symptoms, blood work that indicates I’m a good candidate eventually for a big autoimmune disease to flourish. Or, maybe not. After four docs and two rheumatologists, nobody knows what the hell to do with me. And, this is quite common in the realm of autoimmune disorders. It takes the average patient eight years to get a firm diagnosis.

Nice, right?

So I quaff my favored concoctions and wait and worry in my grey zone about the future, although I try not to dwell there. Too much living to be had and pubs to be discovered.

I suppose you could say I am walking a thin line between recreational use and a problem. I probably wouldn’t argue with you. If you are prone to quoting bible passages condemning alcohol, you might be justified in your fervor. Sometimes it feels like Satan himself has taken over my traitorous body, after all. You might be well intentioned with your concerns, maybe even have voiced such to your friends or family members that are on their own possibly similar journeys. You might make commentary on Facebook or in social conversations about the evils of Big Pharma and how if everyone would just start grazing on roots and vegetables grown in llama shit fertilizer, everyone’s ills would magically disappear.

Believe me you, I have my issues with the medical field, particularly end of life ones. Fodder for future blogs, for sure. But remember that old saying about walking a mile in another’s moccasins before opening your yap? A pathetic paraphrase, but you get the point.

If you have not experienced the daily cornucopia of piercing, throbbing, numbing stiffness and achiness of chronic pain, you don’t know whereof you speak.

It’s the kind of pain that maybe can be temporarily relieved by additional measures such as analgesics, injections, anti-inflammatories, narcotics, surgery, heating pads, Ben-gay, stretching, massage, acupuncture, chiropractics, hot tubs, epsom salt baths, marijuana, herbal supplements, or  good sex. Key phrase being temporary. For me and my thousands of friends it always comes back, like a patch of pointy weeds sprouting and multiplying.

I am really not writing about this to elicit sympathy. I don’t want it, not in any form. I don’t even want anyone to say, “I’m sorry, I had no idea.”  Aside from right now, it’s not something I really talk about. Neither do many of the other legions out there whose world is like mine, many of them in much, much worse shape than me. I am lucky. But (most) people who have chronic conditions get tired of yakking about themselves and don’t want to be Debbie Downers all the time. Of course on the opposite end of the spectrum are those lost in this very thing: “poor me” syndrome. The person whose life is so insulated because they can’t see beyond their own strife, and every single conversation is about their ailments. I hope that is not me as I write about me in this blog. Ack!

Somebody just shoot me if I contract that syndrome. I got enough crap going on.

So, what is the point of bringing this to light? It is not to complain about plights in life. We all have them, and I look at this as my cross to carry, whatever the circumstance. But one of the reasons I began this blog was to bring awareness to certain topics, and this is one of them.

I believe what the majority of people who have chronic pain want is just a modicum of understanding, and it is woefully lacking out there. Judgment, though, there’s always loads of that to spare.

It would be nice to debunk the myth that dealing with chronic pain (and fatigue) is  a figment of one’s imagination, just living in our minds. Are there hypochondriacs or losers trying to work the system out there? Yes, but most of us are legitimately trying to not be that person. Pain can certainly can have psychological ramifications, because it’s depressing as hell. For some people, it literally rules their life and their every move must be planned out. For example, one may have to nap and lay on the couch for hours in order to participate in an activity later that day. Even showering some days can be a heroic effort. The toll this takes on marriages, work, and family life isn’t even measurable.

And yet, some of us are told we brought this on ourselves by our behavior, attitude, or God knows what else, and we just need to buck up. Maybe we did, I don’t know. Maybe I spent one too many nights in college with my head unsupported, bent over books like Snoopy and his doghouse. Maybe I destroyed one too many endorphins and brain cells by pulling all-nighters, partying mindlessly and eating sludge like Little Ceasar’s crazy bread at 2 a.m. Could’ve been exacerbated by the endless slouching, or maybe it was one too many times cradling a phone while trying to cook, or carrying those carseats that were like toting Flintstone barbells around. The leash-tugging, critter-lunging mutt in the house has probably done more to kill off my joints than any of the other activites combined. In any case, it’s done, and I’ve stopped thinking about the causes. What I do think is that we most likely know more about “bucking up” than the clueless fools who keep spouting this, will ever know.

Every single one of us have been scouring for information and remedies, where nothing seems too nutty to try if it will help. There is also probably nothing you could suggest that we haven’t heard of and haven’t already tried, in fact. Yes, we know taking ten capsules a day of devil’s claw and cat’s claw and seaweed worked for Aunt Helen, and eradicating all flour, sugar, dairy, meat, high glycemic fruit, fruit juices, soda, coffee, bread, carbs and nightshade vegetables worked for Cousin Lou. We’re not sure how he’s still among the living, but good for him.  We have all eaten organic or pesticide-ridden food, chowed fast food or rabbit food, banned or didn’t ban packaged food, gulped fermented food or raw food and coconut oil and fish oil, exercised or had to give it up, banned or didn’t ban alcohol, prayed or cursed God or both, and here we are. Some of it works, some of it doesn’t.

We appreciate your caring, really. But if you mention one more time what Dr. Oz is touting as the next cure-all, we might slap you. I am convinced these companies are dumping money in his pockets to go on about the newest green tea extract miracle supplement, then raking it in as desperate folks rush the shelves.

You should absolutely ask us how we are, but ask if we would like to know about something you think would help. Just don’t get offended if your well meaning advice is not taken.

Wait…the lecture’s not over.

You might want to respond (as I used to) that I should be grateful I can walk, I can see, I have a roof, food, a good family, etcetera. I am. I am beyond grateful for these things, not to mention insurance that covers (mostly) procedures and meds. But I refuse to measure my luckiness against those who are not anymore. You know what I mean. You pass by someone handicapped and you think, “Thank God I’m not THAT bad.” Not only does that minimize that person’s trials, but your own as well. It’s true that witnessing others who have more on their plate than us, can give perspective about what matters. But there is an air of arrogance to this that will bring us down somehow or another. In the end we really are all on the same road together, so the sooner we stop comparisons of every form, the better off we will all be.

If you have spent any time looking at pain support groups online, you will find hundreds of people who have tripled your weight in burdens. Many not only have rheumatoid arthritis, but lupus, reynaud’s, thyroid disease, IBS, and sclerodoma to top it off. This is the nature of autoimmune illness; once you have one you are vulnerable to others. And nobody knows why. I have nearly wept upon reading some of these stories. I believe though that I am only a hair’s breadth away, either through fate or choice, from being the person I just cluck-clucked about. So I just want to just practice saying, “Thank you,” without adding, “thank you I’m not bedridden, my whole body useless, cane or wheelchair dependent and IN depends, my mind departed, my whole family dead.”

Of course, if you find me in said condition, please shoot me by then if you haven’t already. Just make sure we toast to our whiskey and beer angels, so I can get my fix before my demise.

Friends, I hope this post finds you pain-free, and maybe a little bit kinder to those who aren’t. There may be a part two to this, as I have some pals that might be giving some input. Stay tuned, and until my next soapbox subject…Cheers!