2020: New Year, Same Dystopian Shit

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January. The beginning of the cold months without the sparkly lights and ornaments. Just cold, slush, rain, snow and a growing ache in joints that you’ve abused far too often over the years. It’s the season of boots, warm jackets, coffee and a general disdain for the wind that seems to always be howling in the Midwestern United States.

As always. I tend to reminisce a lot this month. The years pass faster now, and it’s not as painful as it once was and I am more introspective than I used to be. Taking a trip down memory lane is a lot more analytical, less emotional, more fact finding and note taking than tears or wishes for a time past.

People are shaped by their lives, not just by their own actions but by those around them, current events, and the environment. Events in a person’s childhood could very well effect how they view the world as an adult, right down to their politics or their favorite cardigan color. Then of course, as the child grows, they learn how to adapt and process what goes on in the world around them. Children turn into teenagers, and teenagers turn into adults, and the rowdy twenty year olds at the pub mellow out into well rounded individuals.

Or that’s the hope anyway. I think that mindset comes about from the idea that “things will get better”. No one really believes that the world stays a stagnant place, we’re taught in school that the human race is advancing at an ever faster rate! In the future we’re going to cure hunger, poverty, global warming, government corruption, disease and on and on and on. So the terrible things we face when we’re younger, we can endure them because surely, some day soon, we won’t have to anymore.

Well. This will be my 34th trip around the sun, and I’m wondering: when the fuck does it get better?

Why are all the things that plagued my childhood still an issue? This is what I don’t understand. Supposedly the United States of America is one of the best countries out there, if you listen to our current president, we’re the best at everything we do.

  • So back, more than 20 years ago now, Blue Cross and Blue Shield tried to kick my mother off of her insurance while she battled lung cancer.. this is still the reality for cancer patients and chronic illness patients throughout our country. Not only that, but a cancer diagnosis and treatment, or any chronic illness for that matter can bankrupt a family.. why hasn’t this been solved in the last 20 years? Why is it just accepted as the norm for a family to open a GoFundMe to try and save their home as the medical bills flood in?
  • Why is hunger and poverty still a major issue in our country? The lines for the local food pantries are down the street as our government restricts who can get food assistance and who can not. There are children, in my own neighborhood, that rely on school lunches as their sole meal of the day, and this is a common occurrence in America. Enough so that we have pledge drives for it. Wages have barely budged, while inflation has run amok, and our government boasts almost daily about how great the stock market is doing. Newsflash: A good day on Wallstreet does not put food on the table for the poor.
  • Homelessness. I remember visiting downtown Chicago as a child for my first trip to a big city restaurant, and asking my Aunt why there was a man sleeping on the pavement. I remember tearing up through our entire meal because the idea that people didn’t have a place to sleep at night didn’t compute in my little-kid-brain. If that was reality for some people, I’d never complain when our pantry ran a little short or I couldn’t get new school clothes. Now? We have more vacant houses than we know what to do with thanks to shady real estate investors and Wallstreet con artists, yet we still have families, even veterans sleeping on the streets. How the hell, is this still a problem in the greatest country on earth? (/s)

I could go on and on and on. I don’t mourn so much for my own past any more. My childhood was good despite losing my mother, and the ensuing turmoil. I had gotten through it because “things would get better”. I honestly believed that when I was older I wouldn’t see my friends losing their houses to medical debt, I wouldn’t see children go hungry because working 2 jobs wasn’t enough to put food on the able. I believed in this country.

So no, I don’t mourn for my past anymore. I don’t get angry at the medical debt that I have accrued in the past decade, or the struggles of my childhood, or the sad memories. I mourn for what I had believed would be in the future. I mourn for what we could have been. I mourn for what and who we have lost along the way.

Now, in 2020, with another conflict in the Middle East brewing, with half of our country rallying behind the thought that health care is not something that every human should have, my feet are firmly here in the present. It’s 2020, and our president is tweeting out images of dead Iranians and racist Photoshop jobs and boasting about wanting to commit two different war crimes within a weeks time while the rest of our government sits by idly.. I’m here now, I’m no longer wallowing. I’m here to witness the hunger, the pain, the war, the hate.. because honestly? America, we’ve waiting too god damned long.

Enough is enough. It’s time to move forward and start solving some of our problems instead of dumping gasoline on the fire. It’s 2020, what will you do?

Distress

 

 

 

Chronic Illness: Battling Feeling like a Burden

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It’s a lovely summer afternoon, even if it is a bit humid outside. I’m sitting out on my back deck, with a cold Porter, my journal and my chromebook. My dog is sitting on one of the cushions on the deck, and I’m watching the not-so-little-anymore-squirrel babies climb all over the wooden fence.

It’s a nice afternoon, enjoyable, and I am most certainly grateful for it.

I haven’t been feeling good these past couple of weeks. It started off innocent enough, a bit of cramping, a few extra trips to the bathroom, lack of energy. All of which happen, even during “remission” from Crohn’s Disease. Admittedly though, with my past experiences with Crohns (the first 10 years out of the 12 I’ve had it) it did strike a bit of fear into my heart. I never want to be that sick again.

Anyway, I carried on as I normally do. Upped my water intake (as even a mini-flare will dehydrate me and set my IST & POTS off), at a little bit less, and generally took it easy. Of course, sometimes life just doesn’t work out the way you want it to.

Late last week the symptoms rocked their way up the scale of severity. Joint pain, near constant nausea, between 10-20 bathroom trips during the day (I don’t count at night as I’m too busy being an emotional wreck) and of course a headache and/or migraine and constant tachycardia.

I knew a full out flare was happening, but there was a problem. I had bought tickets for us adults and our kids to go see Reverend Horton Heat at Milwaukee’s Summer Fest. It was also super humid, and pretty hot out, which could put anyone on their ass, sick or not. However, one of my biggest takeaways from being chronically ill for more than a decade now is to never let your illness steal everything from you.

So we went, we made it there just in time, and 2 out of 3 of the girls enjoyed themselves (we brought the neighbor’s daughter with us) and it was fun. I had a super hard time regulating my temperature (Thanks Autonomic Dysfunction) which was pretty miserable and embarrassing as I was sitting there drenched in sweat and shivering. It was honestly worth it to see my kid trying to get video of it and grinning. The kids were all super tolerant of my extra bathroom breaks, as well as being generally exhausted afterwards.

However, as the spoon theory goes, I used more than my fair share of spoons that day, and was negative spoons the next couple. The night before last I was fucking done. I was in and out of the bathroom, and in immense pain. I couldn’t keep food down or even bother digesting it, and was so exhausted I would burst into tears at random.

I condemned myself to bed for the day yesterday because I just couldn’t function anymore. Beyond bathroom trips and needing more water, I just laid in bed. The nausea was completely over powering in the morning, and I spent more time running to and from the bathroom then I did laying around. I knew I had overdone it, and had overdone it for something fun, needless to say I beat myself up for having a day in bed.

Instead of laying there, sleeping, or just letting my body rest, I worked myself up about the things I should have been doing. It was absolutely ridiculous. However, when you’re chronically ill, in chronic pain, or disabled it’s a constant worry.

I’m not pulling my weight.
Everyone has to take care of me.
I should be doing more.
I’m not as sick as [insert time in the past].
The kids are going to hate me for not being fun.
I have so much to do.
Laying in bed just makes everyone else pick up the slack.
I’m a burden.

It’s absolute trash, not to mention bullshit.

It’s just hard to realize that sometimes you need a little rest. Sometimes, you have to take a day off.. just like any able-bodied person. It’s also important to say that anyone you’re with, whether a significant other or family, should love you enough to understand this.

Some days we just have to put our to-do lists aside, and take a day or however long to recover from pushing ourselves further than our bodies allow. There’s no sense in running ourselves on negative spoons, making our bodies worse for the wear, unless there’s no other choice. When that happens, we can only do our best and rest when we can.

It’s super important to remember that no one asks to be chronically ill, and almost all of us would rather be living normal lives. It’s important to give people the finger if they give us any shit for resting, healing or being sick. That includes ourselves.

Take a break. Get those spoons back.

 

That Familiar Pain & Immediate Fear

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As anyone with a Chronic Illness can attest, when you’re lucky enough to go into remission, the first twinge of pain or hint of symptoms can send you into a straight panic. Once you’ve had a taste of living normally again, it’s hard to face the (often times) inevitable downward spiral into all of the stuff you’d managed to put out of your mind for a while.

I’ve been pretty lucky with my Crohn’s Disease. After surgery some odd years ago, minus some smaller flares here and there, I’ve remained in remission. I am especially thankful for that since I don’t think I couldn’t done with a full blown Crohn’s flare when my heart issues first popped up. Anyway. It’s been really nice. Usually being able to eat what I wanted, live pretty much pain free (from that anyway) and just function like a normal adult. Whatever little flares I had, pretty much vanished when I left my previous job. Less stress and all.

However, these past couple of weeks, I’ve been having some of the old symptoms pop up. Urgency, cramps, joint pain, dehydration headaches, you name it. Two days ago, when I felt the ever familiar waves of stomach pain, my heart sank. That’s when I knew it wasn’t just a “mini-flare” that would go away in a few days.

As I was sitting outside yesterday, my mind was just scrambling for comfort and reassurance. When you’re chronically ill, a support net is a necessity, and a lot of us don’t have much of one to begin with. Once you are lucky enough to go into remission, whatever support net you had managed to cobble together, essentially vanishes. To the rest of the world, you’re healed! It’s over!

Then it comes back.

So I sat there, really feeling the need to talk to someone but unsure of who to reach out to. I was just scared to be honest, I still am. It’s hard to figure out who to chat with about how I’m feeling about being sick again.. when so many people had to deal with me being sick for the better part of a decade? There’s massive guilt and shame involved when someone who is chronically ill needs help or someone to talk to. The longer it goes on, then more we feel like a burden to those we love.

Hell, it’s even hard to write about it. I’ve literally been blogging about my Crohn’s Disease on here for a decade. There’s that voice in my head saying: don’t you think people have read about this enough yet? It’s just difficult. It really is.

I guess I’m just writing to get this off of my chest. This sucks.

 

Fatigue & Stfu

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I am exhausted, I feel like I haven’t slept in days. It’s reminiscent of my rambunctious teenage years, where I’d go out drinking cheap beer and staying up all night, but still some how make it to work the next morning and survive.  That’s what it feels like anyway, even though I slept almost 24 hours since Saturday Night.

My eyes burn, my head is woozy, my muscles feel like I just got done running a marathon (add in that my fatass doesn’t run). I’m so tired, so out of it, than when I went to stand up earlier at work, I almost blacked out. (BP dropped too fast) Almost everyone I have seen or talked to today, in and out of work, asked me if I was okay. Apparently I look like death despite my jet black winged eyeliner.

This is the worst my fatigue has been in a decade, since I was first sick with (undiagnosed) Crohn’s Disease. I’m usually a trooper when it comes to toughing it out, coping, and getting through work, but it was enough that I called off work yesterday. It’s just rough. I’m trying to cover everything, you know, up my teas, oils, supplements, and eating, all the way to getting enough sunlight. It’s a task just to get out of bed these past few days, not because of the pain, but because my lack of energy. I can deal with the pain, just not having the energy to sit up in bed is what’s kicking my ass. I’ll either figure it out, or it’ll eventually pass, but… I’m having a hard time.

I don’t particularly like bringing attention to myself at work when I’m sick either. It’s really nice when people ask how I am, but I get really aggravated when it’s followed up with a typical “I know how you feel, I had…” statement. One girl at work really is bad at it, and I’ve been trying for years at this point to not snap at her. This morning it went like this:

Her: “How are you feeling?” Me: Not great.. Her: “Oh, I know how you feel! I’ve been tired lately and this weather has been giving me a headache!!”.

I smile, and go back to work, but in my head I just scream “a booze headache and lack of sleep isn’t the same as being sick for a decade!” The worst is when the other girl at the office says “Well, if you feel that bad, just go home!” I’m sorry, I can’t. If I went home every time I felt like shit, I’d maybe make it to the office once a week, I have to support myself, I don’t have any other choice.

Yes, it’s a bit of a pity party, but I’m tired of it. I’m not going to say anything nasty, but you bet that I’m strangling them in my head when I’m smiling on the outside.

I’m just frustrated.

 

I hope I start feeling more like myself soon.

 

Headaches and Headache Balm

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Most of you know I’m pretty science based. Hell, when you have a chronic illness, you kind of have to be with all of the treatments you have to endure. I’m the first one to throat punch a person who tells me to stop my meds and eat some raw foods to cure my Crohns, or take a walk instead of take my antidepressants. I don’t particularly believe in god, though I tend to swing more towards agnostic rather than militant atheist these days. (Fuck organized religion though!)

However, over the last year or so, I’ve surprised myself by being a bit.. holistic? I’m not even sure that’s the right word I’m looking for. I started using essential oils to treat my anxiety and headaches among other things.

It all started back when my heart started acting up. (Inappropriate Sinus Tachycardia, although as time goes by, it seems closer to POTS, but I don’t have the funds to see a different EP for a second opinion.) I had always been a very anxiety-ridden person, and having a racing heart that occasionally needed to be medically stopped, shot my anxiety through the roof. So a friend of mine gave me some essential oils to try for my new-much-more-hard-core panic attacks. They seemed to work.

So I started investigating different kinds of oils and what people use them for. Now, I’m not one to say “Oh, try ingesting 3 drops of this oil, twice a day and you’ll be cured of this ailment!!”, because that’s crap, and we all know it, but I do think that certain scents are calming, and certain herbs have been proven to work as anti-inflammatory (and disproved – I’m looking at you Turmeric.) Over the past year, I started diffusing certain scents that help me calm myself down when I’m overly stressed or anxious, or help me (or my daughter) sleep when a bout of insomnia strikes.

I’ve also started using Headache Balm (which is essentially peppermint and beeswax) which delivers a cooling sensation when applied to the neck and temples. Combine that with breathing and some Excedrin, I can battle my way through a tension headache or migraine without having to use my injections or head into the ER for IV medication.

Last night/today was a prime example. I went out to have drinks with a friend of mine, but a couple hours after leaving the house, I got that twinge in my head that signaled a migraine coming on. I borrowed some of her headache balm and called my boyfriend for a ride. I came home and was able to get some sleep with more balm and a lot of Tylenol.

Woke up this morning, and it was still there. It was miserable. Jon massaged my head with balm and I took a Zofran to battle the nausea that came with it. I also used some oils to keep my anxiety down (which I always get once I get nauseated or am faced with using my very expensive medicine that I can’t afford). By mid-day, it was finally subsiding, with no real damage beyond time lost, so I came home to nap.

Now, I’m enjoying my Saturday night, curled up in my bed (with a a bit of a Crohns flare, been bothering me for a few weeks) and my diffuser going to help me stay relaxed.

The way I figure it, is if the balm and oils has a placebo effect, than great! I’m all for placebo effects! If they don’t work! Then my house smells great and I’m moisturized! I’m not delusional enough to think that some ginger oil is going to cure my crohns, but I do think that some lavender oil helps me sleep, and some lime and geranium picks me up. No matter what, patchouli has always helped me stay grounded. So why not give it a try?