Little Reminders

I spent a delightful time in the yard on Saturday. I weeded my herb garden and weed whacked as well as picked up the sticks that were all over from the recent thunderstorms. I had my UV shirt on and a big floppy hat etc. However, when I awoke on Sunday, I knew that I was flaring.

That's right, Goat. Stupid lupus.

I didn't write yesterday because I couldn't think clearly. My head was one big vacuous shell. My brain was in there somewhere, but it apparently needed some me time. Too bad you can't reboot like a computer. My skin felt electrified like there was a burning coil running through it. No actual sunburn mind you. Just the sensation that my nerve endings were all on hyper active drive. My muscles and joints ached. I was also completely tired whenever I did the littlest things like go to the bathroom or fill my coffee. I was absolutely useless. Times like this send you backward to that initial grief and you sift through the self-care and coping mechanisms you know.

Back to when I didn't have this shit? Sure thing, 10! 

My sofa and I became one for most of the day. I scrolled through Facebook. I read a few articles of interest and decided that there wasn't really anything of importance there. I could only look at so many cat pictures and read about the state of our country's affairs. I can't do anything about that last one when I can't take care of myself with any effectiveness. I have to back-burner my activism, which makes me grieve for that sense of activism. Vicious cycle. I did find an article of interest regarding migraines. Sometimes reading articles about some of my body's shortcomings is oddly comforting. I tend to share these items and some folks read them. I am sure some just click the crying emoticon. Others likely get annoyed that I'm sharing about my migraines again. Tough. It's not about them. It's my grief. My condition. My share. Some will miss it completely, which is fine. I don't share for reactions; just interest, knowledge, and comfort.

I share this basset because it amuses me. If it amuses you, great. If not, I don't care.

After that, I was really drained and just konked out. Then I watched a few episodes of my Supernatural boyfriends. My go to for the last while on days with the sofa has been Anthony Bourdain's Parts Unknown. I finished the last three seasons available on Netflix just before his suicide. I always found his demeanor and travels as a way to escape my own situation for a while. But I finished that so it's back to Supernatural. Netflix and the like are great places to direct my attention when my head is not altogether with it. Eye candy is a great distraction from my grief and situation. 

I would eat any sandwich you made, Castiel. 

When my head felt a bit clearer, I did a little investigating on my Botox, migraines, lupus, and IBS. Sometimes new things get into my search results. Sometimes it's the same old shit. Regardless, I refine my search words, which helps bring up new stuff. I still get a lot of cosmetic results for Botox of course. Many those plastic surgeons and other spa representatives repeat how there's no risk from Botox. I think they're a wee bit biased. Then I read other articles and posts from other doctors about how it can cause troubles for people who have autoimmune conditions like Hashimoto's. I knew that though. One doctor stressed the need to study its use with autoimmune conditions other than thyroid reactions, but those were rare results in my search. One video  had this guy who said he's a doctor cautioning folks with autoimmunity from using Botox. He was quiet, a little scattered, and wrapped in a blanket like his office/room was really cold. Anyway, I feel compelled to question his reliability until further exploration. Browsing new reports and studies on my ailments is also a way to ease my grief. It reminds me that I didn't do anything to deserve this. It also reminds me that I do all the right things, and the flare is just part of the gig I didn't sign up for.

 

Go ahead and dance it out, Badger.

Some people turn to their support groups. I am not actively in any support groups. I have been mind you. I found them helpful for a time, and once in a while I go into forums to check what others have to say about their experiences with medications and what they've found helpful. I can't stay long most of the time though. Sometimes they pull me under and I have to step back. Others though find a lot of what they need there. I can't judge them for that. We all deal in different ways. What we need one day may or may not be the same thing we need a week later.  

If hug it out works for you little primate, hug away.

I know others turn to their faith for support. I am not one of those unless you count wanting to sit in the woods and meditate, which isn't possible when you have lupus and need to stay out of the sun during a flare. *sigh* I'm going to the forest soon. I will rest, relax, rejuvenate, and guard myself against the sun as much as possible. If praying brings people relief in some fashion, so be it. Cope your way, and I'll cope mine. Hopefully if I leave them to their spirituality, they will also leave me to mine without trying to pull me in. That discussion would make me feisty and feisty brings stress, which is not good for anyone. 

I hear ya, Fish.

Little reminders of my chronic illness send me back through grief. I deny that it's happening. I get angry that it's really happening. I bargain with myself on how to stop it happening. I get depressed and I might cry a bit and I might seek some chocolate while it's happening. I can't stay here though. No one can without professional guidance. When I finally get to accepting that I need to park myself on the sofa with some Netflix, I hope that I'll move through the flare with as little disruption as possible. I still feel a little gross today, but I did get out of the house. I went to the grocery store, OK. Small steps.  Now I'm beat. I might not do the greatest job proofreading this post. I accept this. 

Tough titties, Oprah.

My grief is mine. I own it. Just as there's no one way to grieve after someone dies, there's no one way to grieve when your illness reminds you it's still there. If researching your condition gets you through. Do it. If prayer makes it easier, go for it. If posting online in social media or in a support forum gets you back to acceptance and that road forward, make it so. Whatever gets you back to good, choose it. May you not suffer more from someone else's judgment on your journey. That only helps the other person since they've made your coping process their business. When you're ready, you'll know it. Until then, take care of you as you know how. 

 

You do you, Moose. 

Travel and Consequences in Portland

Portland is indeed weird. Not exactly what I expected, yet still what I expected if that makes sense. I enjoyed myself, and I would return for further touristy good times. Per my previous post about traveling concerns, I figured I'd do a follow-up. I wasn't far off from my predictions.

Hey, Goat! Saw some of your relatives at the Portland Zoo.

Migraines were the immediate problem. Too little sleep prior to leaving meant popping a triptan in the airport before even boarding to leave. That really made travel suck. Then after our first night, I still had it when I woke up at 3am. I stayed buried in my blankets, but it was futile. I popped another triptan before venturing out for our day. It wasn't until 2ish in the afternoon that things started to clear. The migraine reared its head again just in time for traveling home. Too little sleep before leaving. Clearly, the well-established sleeping pattern I have honed over time really doesn't like being fooled with. Good to know. Side note: When I popped the first Zomig in Portland, I discovered the pharmacy gave me 1 box of the form I use and 2 boxes of the melt in your mouth variety I can't stand. In case you don't know, those taste awful. Not at all like M&Ms.

You can run, but you can't hide. I will find you!

IBS was another a major discomfort as predicted. Travel just likes to tie my guts into knots. Cramping, bloating, and no satisfactory bowel movements. I behaved myself food-wise, too. Portland is a totally gluten-free friendly location. That made it helpful. Also, my travel partner is well-versed in navigating the gluten free waters. I got worried when I had a delicious pastrami sandwich, though. I am a sucker for a pastrami on rye. I asked for it GF, so I expected it to be the same bread type as hers, but it was definitely a rye. It could've been GF, but I'm not certain as my mouth broke out in ulcers right away. I wouldn't be able to really tell any intestinal issues I suppose since my guts were already in a state of rebellion. Of course, perhaps this is just more evidence that rye affects me to a lesser degree than white or whole grain. Who knows? I'm home and feeling better.

Yes, but is it gluten free?

While the lupus behaved itself for the most part, I did have a lovely run in with sun stupidity. I faithfully wore sunblock and UV protective shirts (OK, one day I went with out a UV shirt) to prevent too much crappiness. Couldn't stop the sun stupid since being outside is kinda part of being a tourist. Sun stupid happens when I've been in the heat and sun too long. We went to the PRIDE parade and then took a walking tour. Both were great fun and I learned a lot about Portland's history. I also saw a lot of pasties, assless pants, and speedos. Unfortunately, I began to feel my mojo drain from me the closer we got to the tour's end. I was getting a bit woozy and feeling floaty by the time we reached the tour's storefront for the underground portion of the tour. I didn't hit the wall as is sometimes the case. That would've meant calling a Lyft back to the bungalow so I could nap; I wouldn't have made the walk to the train or bus stop. I'd've fainted first I think. However, my spacey self had to call off the Chinese garden since it would have been more time outdoors. Time in Powell's Books helped me cool off and regain some of my faculties so I didn't wander into traffic or get the dizzies, but I was still kinda out of it. No lupus lesions or full on flare, but definitely a case of the sun stupid. Good times.

You don't have to be so pleased with yourself, Sun. 

After some much needed catching up on sleep, I am feeling pretty good now. I have a camping trip next week and a Friendcation 2018 at a cabin in Western Montana after that. I'll behave myself as best I can, but I know that even that might not be enough. Not letting my Portland woes stop me from these events, but I'll know more what to expect.

Find some shade. Get some rest. Good plan, Moose.

Life in Plastic, It's Fantastic

I was cleaning my hair brush today. I finally have enough hair again that it requires a brush to make it do something other than flat with flip wings. I had pulled it out right before my trip, but I hadn't taken time to clean it until now. No, this isn't going to be all about how dirty my brush was (although, to be honest it really needed the old hair spray and other product leavings cleaned). My brush is plastic as are many other things in my house. There's a challenge going on right now about how to reduce your plastic footprint. I've been pondering plastic a lot for longer than the challenge though.

No need to fight, guys. It's complicated, but not that contentious.

You've probably heard about the Pacific garbage patch. I'd heard about it a long time ago, but like many, I had an incorrect image of this massive floating island made of plastic refuse until I did some research on it several months (perhaps longer) back. The BBC and National Geographic did some great pieces on it if you're so inclined. It's not something you can walk on. It's not one, isolated mass. It's not mostly plastic bags or soda bottles. There are single use plastics mind you, but the bulk is from fishing vessels. Among those nets and gear, you can see plastic bags, soda bottles, toys, and other consumer plastics some of which are as old even older than me. But it's mostly old fishing garbage.

Not sure if there's any of this though.

I've read a lot about how the microplastics and other plastics impact ocean creatures. Whales that wash ashore with massive amounts of plastic in their bellies. Birds with stomachs hardened by plastic garbage they've eaten. Turtles with beer rings wrapped around them so they grow deformed. The haze of the plastics that cloud the visibility under water. As someone who holds sea life near and dear to her, I find all the stories distressing and wonder what I can do about it without making matters worse on this planet.

That's right, Earth. Keep on tryin' is what we gotta do.

Some cities have enacted plastic moratoriums so that people are forced to use reusable bags instead of plastic ones. I do this. Yes, I am one who sometimes forgets. I often don't use the plastic fruit and veggie bags. We actually have some reusable varieties of those, too. While this seems like a logical step toward reducing plastics, the inevitable counter-argument points out how much cotton costs to produce versus plastic.

No, Janeway. Just predictable deflection.

With the bags, it is considerably cheaper to use plastic. Of course it is! It's been used longer and a lot of money has been poured into making production quick and easy. Alternatives to plastic make life more difficult and are not yet cost effective when you consider things like emissions. Another example are diapers. Cotton diapers cost a lot to produce and negatively impact carbon footprints. There's also the cost if you choose to clean them professionally. Cloth diapers are significantly cheaper to the moms and dads since you are reusing rather than buying new. If you clean them yourself, it's better than a laundromat and contributes to the reduced cost. However, the environmental impact from producing cotton diapers is staggering. Apparently the moratoriums on plastic do positively impact the coastal communities, but for landlocked states like mine, it's minimal and means using that cotton bag a gazillion times; like enough times that you'd be lucky if duck tape held it together.

Although...it is surprisingly strong.

It seems to me that perhaps investing in ways to make the cotton production cheaper and the environmental impact less is the way to go. Of course environmental legislation is being rolled back, so who knows where climate change policy and innovation of new production items will be going. Nowhere good would be my guess. Incentive is going to disappear and I am cynical enough to doubt too many big companies are going to try if they're not required to. Hopefully, private sector development and eco-conscious companies will lead the charge. Hopefully.

May this not be their response.

Still, I feel I should do something to reduce my plastic consumption. I use the cloth grocery bags. I don't use the plastic fruit and veggie bags. But I still have plastic storage bags, plastic wrap, and purchased products that come layered in plastics. It's tough. I have found silicon reusable storage bags to reduce reliance on the disposable ones. I did find beeswax sheets to replace plastic wrap. Yes, they are cotton, but I will reuse them a lot and they're apparently fairly sturdy for longevity. However, I went with the silicon stretchable food covers. I can purchase groceries that don't over package. I can lobby for less plastic in consumer products. I just need to feel like I'm doing something to reduce the impact on the oceans.

Frolic away, little cephalopod.

An informed consumer must research and weigh the impact of choices against what other eco-issues will be impacted. Being a good steward for this world is a difficult. One article stated bluntly that reducing meat consumption would have more beneficial impact on the environment than plastic replacement on grocery bags. Guess it's a good thing we're getting our meat from a local producer who isn't part of big ag.

Rest easy, Moose. Not you. Never you.

Have Chronic Illness, Will Travel

I'm taking a trip soon. A friend and I are going for a few days to the Pacific NW coast. We've never been to the city we have chosen as our destination, so this should be a fun and exciting trip of firsts. However, in the recesses of my consciousnesses is the fear of pain.

Sorry, Goat. I can't claim you as a comfort animal.

I'm packing my eye mask of course. One aspect I've written about before is the need for consistent sleep patterns. With the time change, this could prove a bit of a struggle. Interrupted sleep cycles can wreak havoc on all chronic conditions in my menagerie. I will do my best to keep well-rested and regular with all things slumber-related. Hopefully, it will keep things like fibromyalgia and migraines at bay.

That's right, Pooh Bear. Rest well.

Since we're going to the coast, that means a big elevation change as well as weather systems that are decidedly rainy. I know that drastic weather changes and rainy storm systems often bring on the migraines and achy joints. The weather report is looking mostly clear for the trip, but you never really know with weather. Even so, I just hope that it won't set off the fireworks in my head. Luckily, my friend gets it. She graciously asked if we should buy tickets for an event early or wait and see how I'm doing. That is truly a compassionate gesture. I'd hate to get tickets and then wake up with blinding pain, photo/phonophobia, nausea, and/or balance issues and not be able to refund or transfer our tickets. I've tried pushing through pain because of pre-planned excursions, and it only amplifies the migraine experience. I'll pack my triptans, but you just never know what things may come.

That's right, Simon. That's the face I make every time I see a storm forecast.

On the more embarrassing side is the IBS. Travel notoriously fucks with your body when you deal with IBS. Usually, I get constipated, which leads to noxious gases, bloating, and terrible cramping. It doesn't really matter how well I eat; it happens regardless when I travel. I used to think I could mitigate the results by being hyper-vigilant about my diet, but that didn't prevent the humiliating gastro-consequences. I'll pack my IBS supplements, watch my food intake, and keep Gas-X in my purse, but I know this one will cause me no small amount of trouble.

Oh! Hermione, I wish you could wave your wand and rid me of this scourge.

Oddly enough, I'm not as concerned about the lupus. I have my zinc oxide sunblock. I have a floppy hat. I have a spanky shade umbrella. I have my UV shirts. I really think this will be the least of my worries. I did purchase a new UV swimsuit that has long sleeves. I'll save a bundle on sunscreen, but that's for other trips later this season.

Hopefully, this will not be me.

I got my saliva-inducing tablets and my eye ointment to help with the dryness. As long as I carry my trusty water bottle, the Sjogren's should be OK  as well.

I could be wrong, but I don't think that's quite how it works, Cat.

Anyway, travel always comes with that extra bit of anxiety and fear to temper your excitement. I wish that wasn't the way it is, but it is. You can prepare all you want, but there's no guarantee when it comes to chronic illness. Regardless, I will eat new foods, see new places, and spend time with a dear friend. Chronic illnesses be damned.

"Sometimes the greatest meals on vacations are the ones you find when Plan A falls through."

I'll remember your lessons, Anthony. We'll all remember.

The Sexiness of Chronic Conditions

I love watching movies or TV shows on streaming sites. I always laugh when they show someone who just woke up who appears refreshed and all together. Granted, they use more "natural" or "bare" make up on women now, but good gods! Seriously? No one ever looks like that, especially folks in the Chronic Illness Club.

OK, Goats. You probably look great when you wake up. Rub it in why doncha?

I believe this lack of waking up hot has to do with what it takes to help us sleep through the night. I don't know about others, but my friends and I have a variety of nighttime accouterments that prevent us from waking up hot. I'm going to share a few of mine.

Oh stop, Genie. That's not necessary.

TMJ
I grind my teeth and clench my jaw. Always have as long as I can remember. I've worn a bite splint at night for decades. It makes my bulge a bit and it makes me sound like Jimmy Jr. from Bob's Burgers if I try and talk. In the morning, its kinda stuck in the mouth and coated in saliva slop. This is just the tip of my Sexy Chronic Illness Club's evening preparations.

If all I had was a bite splint, I'd think this guy likely has it worse.

Sjogren's
I recently started using Xylimelts nighttime tablets to keep my mouth from drying out and discouraging the damage to my teeth from bacteria and plaque. Hopefully I can stave off tooth decay and gingivitis by putting these little tablets on my back molars. Both sides on the bottom so as not to interfere with my bite splint. During sleep though, you drool a bit, so you end up with oral secretions on your face. These tablets work well for keeping me from being parched in the morning, but they do make me look like a chipmunk storing seeds for winter.

Yup. Looks about right.

Acne
If you think acne isn't a chronic condition, then you've never had to live with the shame and embarrassment it brings to the party. I'm in my 40's now. Hormones are just making breakouts more common. Dammit! So, I am using Proactiv regularly. I also have these delightful Corsx acne patches that help heal blemishes more quickly. Of course, I also have sebaceous cyst issues more often than ever before in my life, so occasionally I also have to use unfiltered apple cider vinegar and a small Band-aid to help eradicate those huge lumps from my skin. Mmm. Good smell and Band-aids on my face.  It looks super sexy. I'd do me.

That's the plan, Man.

Sjogren's Part Two
Eye ointment is essential. This stuff looks like triple antibiotic ointment, but you squirt it in your eye making it impossible to see. It kinda gets goopy almost like you have pink eye so instead of perfectly made- up eyes, I get crusty eyes. I know this is painting a gorgeous picture in your head.

But how would I know? It's not like I can see with this goo in my eyes anyway.

Insomnia
Sleep is vital according to the people in the know. You need it to manage your migraines, your pain, your moods. This list is long on the sleep importance. Consequently, blocking out as much light from streetlights and for now--the longer days--is required. I've worn eye masks for years, but they have become worn out. My husband generously got me a new one that is soft, pillowy, and contains lavender and chamomile. I love it. It blocks out those pesky ointment eyes from view, too.

Now that would be problematic.

Snoring
I'm not entirely convinced I have sleep apnea, but I do have a light snoring issue that could contribute to lack of sound sleep and even my legally deaf husband can hear if he's awake next to me. Consequently, I got a chinstrap thingy that is supposed to help with the alignment of the jaw etc. to decrease the collapsing of all things snore related. Of course with the two bands trying to hold two items on my head, my hair is left sticking up all over. No stopping that bedhead. It took some getting used to, but try to feature it along with the eye mask, spit encouraging tablets, and dental appliance. I'm runway ready, baby!

Floofy Cat, why do I get snowing GIFs when I search for snoring?

The other night, my husband and I were laughing at all the things that must be part of the nocturnal preparations. It really is ridiculous to consider. Needless to say, anyone with a chronic condition like these will never look like Hollywood first in the morning actors/actresses. It ain't happening.

Still looking better than me, Moose.