Reward vs. Risk

I guess I have more to say on this pacing topic. It's been on my mind a lot lately as I have felt so lousy that I've been even more reclusive than usual. Partly too, my husband has been going through a med adjustment, so I want to be close by and not push him either. These transition times are always tough.

Don't judge this moose. This moose knows what it's doing.

During our recent PRIDE events, a local theater person who we've worked with previously approached us about getting back into theater. She is a fun person and I've worked with her on shows before where she's proven to be reliable and talented. I have no qualms about working with her again. Anyway, during her charming ramble of describing her current project and process, she really wanted us to know that if we were ever interested in theater again, she'd love to work with us. I was really touched by her invitation. Honestly. I let her know that, too. I also was honest when I said that theater is a big commitment for us. I didn't go into a lot of detail because between the intermission music at the drag show, the din of conversation, and the alcohol we'd all ingested, I didn't really see a need to elaborate.

On second thought...

That may have been the wrong call. When someone with chronic illness says something is a big commitment, it means something different than when someone without chronic illness says it. I guess that's the crux of it. Her response was it is a big commitment (thanks for acknowledging that), but she went on to discuss the benefits associated with her dinner theater including the getting paid part. She was really trying to pesuade us. There are some really talented fun people in theater, too. I have many fond memories of working with her and others here in town. Working in theater is thrilling, exciting, and the hard work is so worth it. I believe in having a lively arts scene and this town needs some non-musical theater for us types who are loath to sing in front of people. I have a degree in theater for a reason, but when I say it's a big commitment, I don't just mean the obvious time commitment. That's a huge factor, but it's even more complicated now.

You might want to sit down for a bit. This might take a few.

A typical rehearsal schedule used to run 4 or 5 nights a week along with anywhere from 1-3 weekends of performances. There's also time where an actor has to make time to analyze a script--even a silly and lighthearted dinner theater piece--and memorize those lines. Then there's the finding props and costume times and helping with publicity etc. In theater around here, if you're involved, you do more than one job; that's just how things get done.

And you thrive on it.

Let me take a minute to address these points through the lens of where I'm at now.

Just like this underwater photograph, there's more than what you see on the surface.

(Hint: It's a pic of an octopus)

Time--I am selfish with it. Some nights I get home from work and all I can do is veg for a bit. Sometimes I come home and take a quick nap or just a bit of time with my eyes closed to center myself. My job takes a lot out of me, and giving more of myself in the evening too represents a far greater and more complicated involvement than it used to. Fatigue is not just the "Oh I'm so tired," it's the "I'm tired and there's not enough sleep to help me feel refreshed, and I can't clear the fog from my brain to function" kind of fatigue. I'm also very protective of my sleep. I need 7 hours to really be at my best. I cannot emphasize how important sleep is to my overall well-being. There's a lot of research out there on the necessity of sleep in managing chronic illness because of stress and inflammation concerns. If I dedicate my time to a theater project in addition to what I already do, it requires more planning and forethought than I think people realize. There was a time when I would've thought nothing of it and thrown my hat in after an invitation like hers. I've learned to be more cautious now.

Yes, but how will your propsal impact my energy and my sleep?

Stress--while the stress of putting on a production can be considered good stress, it can also bring with it the bad stress. Any time you work with people, personality conflicts can crop up. I demand a lot of myself in performance. I'm also picky about theater. I have standards, and I find it grossly stressful to work with people who can't seem to do things like learn lines or let the director give the notes. It stresses me out to be sitting at a dress rehearsal with people who can't seem to pull their heads out and get the job done. Honestly, if I'm going to pledge my time and talent to an event for multiple weeks, then I want everyone to take the pledge seriously and be a little bit professional about things. When people aren't professional, that causes me stress. Stress is harmful to people with chronic illness. One of the major tidbits of advice for managing one's illness is to manage stress. Giving my time over and inviting stress poses the potential for havoc. It means opening myself to flares, which means not being able to anything but wallow in bed. Seriously. The level of pain and fatigue associated with an all out flare is brutal; therefore, taking on a production I have to do a serious risk assessment. Which brings us to...

Wait for it...

Fear--yup. I'm fearful of what a theater commitment could bring. Since being diagnosed with lupus, I have experienced unfortunate side effects that make me fearful of something I dearly love. When I told her it was a big commitment, it also meant setting aside those fears. For example, memorizing lines is a lot harder now. I was always the type to learn other people's lines as well. This was helpful should someone go up on their lines. I also have noticed a delay. When I am foggy, tired, or stressed, calling up my lines gets tricky. I might hesitate or panic because the line isn't there fast enough on my tongue. If someone else goes up, then I don't have the improv chops I used to in order to cover. For a performer, this really scary. Furthermore, I've also had flares that kept me from performing. The last big show I did I had to have an understudy for my small part because I could not move my arms without a lot of pain when we came to our second weekend. My arms were so painful that I couldn't raise them, gesture with them, or concentrate enough even for my small part. The time and the stress laid me out. Flares suck and I am in no hurry to hasten the next one.

Moose has not time for flares. Patooey!

As much as I love theater, I simply cannot convey the meaning of "it's a big commitment" clearly enough I guess. Maybe when I'm passed all this current upheaval, I can think about it again. However, I'll still have a lot to consider. Things just aren't as simple as they used to be.

A Change of Pace

One of the fun--and by fun I mean annoying--aspects of having a chronic illness is planning time for recovery. I don't mean recovery as in POOF! you're cured. I mean planning ahead so you have time to recover after some kind of physical activity whether it be a shopping trip, a night out with friends, or a long distance drive in order to live a teenage dream. It's hard to explain to folks who aren't familiar with chronic illness, but it's something those with chronic conditions must accept and try to adapt to. Think of going out and drinking way too much alcohol all night long. Then, you need the next day to rest and apologize profusely to your liver until you are fit to do something other than groan and puke pathetically. You feel lousy. You need time to take care of yourself. You need to eat right to get your body systems online. You need to rest and spend some quality time binging on Netflix. That's taking some recovery time. For those with autoimmune issues like we have, we don't need the alcohol as a catalyst; we just need to consider how much we can give before we need to cocoon ourselves away from the world.

This is what happens if you don't plan for recovery time.

Earlier this month, my husband and I had the great fortune to witness The Cure in concert in Denver. They were fantastic btw. Way better than I anticipated and with four encores, I was a happy woman. We've driven down to CO before, and I had planned a day of recovery and relaxation once we got to CO and one day for when we got back. I was not prepared for either the guilt of not socializing with friends along the way nor was I prepared for the idea that we might need more recovery time than the last time we drove down. Things I failed to consider: a) my husband has been off his Humira for more than a month b) I am not fully healed and on pre-op lupus-Sjogren's-fibromyalgia status. Seriously, I didn't think he'd be off his med for several weeks before the trip, and I really thought I'd be doing a lot better with the whole post-surgery healing. The last time we made a journey such as this, one day after arrival and one day when we got back was sufficient. Not so this time. My past experience and best laid plans got totally fucked. It took a lot longer than one day to recover from that trip. In fact. a week later I still wasn't feeling great and wound up getting a blister pack of steroids from my rheumatologist at our 9 month check up. Goody. I love steroids.

How I feel on steroids. That's why they call it 'roid rage, kiddies.

While we were down in CO, my husband posted something on Facebook about our impending concert. Well, we have a friend there who texted me about being 15 minutes away from her house. I felt so guilty about not calling her before she saw his post, but I also knew that with as slowly as we were moving and the nap that I desperately wanted to take before the concert, making time to socialize was not realistic. Thankfully, she's a completely compassionate individual who chose not to read me the riot act. After all, we are getting some quality time together in July. Way better time to socialize and get caught up than the vaguely rutabaga-esque cognitive skills I was displaying just then. I had the good sense to buy plane tickets for that July trip. Unfortunately, these are the choices you must make when you travel and have a chronic illness that is in a tenuous state of flare versus functional. You can't always socialize when you travel. Sometimes you just gotta make the tough call and take care of yourself. And your spouse.

Otherwise you feel like this with the added pressure to hide it for the sake of other people. I'd rather not, thanks.

Speaking of guilt, we have a lot of family between here and Denver as well as my aunt-godmother who lives in Denver. I did consider trying to figure some time to see her on the trip, but that wasn't really a good plan either. Drive down, concert, drive back and then go to school and finish the school year felt fairly crowded and possibly overwhelming to accomplish. I still feel guilty about not seeing her(former Catholic here), but I am so glad I listened to my gut on this one. Planning for recovery means keeping an open agenda without a bunch of appointments just in case you feel lousy, which we kinda did. 12 hours in a Nissan pick-up that has bucket seats is not riding in comfort, and our bodies were achy and our spirits cranky. Now I know many in my family who choose otherwise--they'd push and schedule their trips around however many friends/family they could possibly knock off their hit list of commitments. I am not that way, and I don't apologize for it. Feel guilty yes, but apologize for attending to our physical and mental needs, no. When we started planning this trip, my subtle mother reminded me that we did have family we could stay with. I knew this. However, I also knew that I would need time to rest and big gatherings with a lot of people--family or not--did not appeal at all. Did I mention my aunt is a nun? I didn't want to stay at a convent where we'd have to find parking at the venue, drive into downtown Denver after the concert, and then possibly wake someone up to let us in once we got back to where we were going. The hotel we stayed at was a five minute walk from the venue. Way simpler.

We walked across the street, into the hotel, and BOOM! we were in bed. It was magical.

In the chronic illness world, it's called pacing. Pace yourself and honor your limitations. One article I read suggested you make your plan with all you want to do. Then cut out 50% of that. You can always add more in if you're up for it, but better to plan for the worst I suppose. Geez. That's utterly depressing isn't it? Yet, it's reality. Guilt included.

No need to make me feel worse. I will punish myself with guilt better than this guy.

I've learned that if we ever decide to take a trip like this again we either need more time for recovery, or we need to fly. It's that simple. Until we get a comfier car anyway. Perhaps a different car would make it better, but you never know. Flying is a fairly safe bet. We could conceivably be social and make commitments on that score if we didn't have highway fatigue. Chronic illness kinda takes the mystique out of the great American road trip myth.  Now if we could just afford plane tickets when we decide to take in a belly dance festival in Seattle next month. Maybe Robin Hood will ride in on a unicorn and shower us with cash.

What? It could happen.

PRIDE in My Hometown

June. That means all around the country LGBTQ groups are participating in PRIDE events, celebrations, and parades. Last weekend, I attended my first ever PRIDE, which was held in my hometown.

Oddly--if you Google Montana PRIDE 2016, you get this tiger before you get any hint of rainbow anywhere in Montana. Maybe because I have "labeled for reuse" as a filter.

Last Thursday I gathered with friends to Chalk Up for Love. This meant we were to use sidewalk chalk and leave inclusive, welcoming messages on the streets of the parade route. People brought their kids, their chalk, their friends, their lovers, and their dedication to equality for all and plastered sidewalks in a 5-6 block area on the route as well as on the streets directly to the north and the south of the route. Then we ate pizza and drank beer.

Wait! Come back here so I can enjoy your frothy and hoppy  goodness! 

On Friday, we attended a drag show. It was my second drag show and my husband's first here in town. A couple friends of ours started the performance group and were completely stoked to be part of the PRIDE Gay Agenda. The show itself started late. The venue had a list of special drinks just for PRIDE. The Twisted Rainbow was a purple concoction with an awful lot of shots in it that if you didn't stir, would leave your mouth in an unfortunate pucker. Anyway, we sat at the VIP tables, which meant we had a server to get us drinks, we had front row seats, and we got swag bags. Pretty sweet.

VIP bug got swag, baby! Although I likely won't need the hair straightener any time soon.

On Saturday, we did not walk in the parade as I had the time wrong, but we did attend the rally afterward where I got to listen to my friends who helped organize the events discuss the process and history of PRIDE. I got to listen to politicians who were both out and allies. I was incredibly impressed with our governor in particular. You should Google Steve Bullock and see if you can find transcripts or video of it. He knows how to speak at a rally.

Denise Juneau and Steve Bullock and Dirk Sandefur will have my vote. 

All in all, I enjoyed getting to participate. I saw a different side of my hometown that made me enormously proud. I also felt enormously unsettled.

Nervous goat is watching all.

First and foremost,  you couldn't ignore the shadow of Orlando that cast itself over the entire event. Less than a week after the deadly shooting, we were holding PRIDE in a Montana community where guns are common and homophobia is not uncommon. I participated in the chalk event not just as a member of the LBGTQ community, but as a member of my hometown community. I wanted to make sure that visitors here felt welcome. Then as I sat at the drag show, I was overwhelmed at the ease of everyone. They gathered despite the shooting. They came out with confidence and strength that I found remarkable. I admit though, I caught myself more than once giving in to melancholy and panic. I checked the exits so if something happened, I knew where they were. I looked at the people near my table so I could hopefully recognize them if I needed to identify someone later. I choked back my fears and my  tears when I thought of Orlando and what could happen to all these beautiful people who came together to defy the hatred that stole other people's lives only 5 days before. Many at my table were my close friends and family by choice. I watched them and couldn't help but think about what life would be like if they were suddenly gone. It was emotionally overwhelming.

Yup. That's about how I felt by the time I got home.

I also sat there feeling a bit like a fraud. You see, I never really considered my own sexuality until after I was already married. I knew I was attracted to men and only dated men growing up. I also ultimately married my first love who happens to be a man. Imagine my shock when I realized that I was also attracted to women.

OK, so this wasn't the exact face I made, but you get the idea.

At PRIDE, they do this thing called roll call. When they called for the bi's, I cheered a reserved affirmation that would not have drawn attention from anyone. Compared to others who screamed, whooped, and applauded, my response could possibly be termed "half-assed," even though it was a huge step for me to say it out in the open like that. I'm a  fairly private person who doesn't think her personal preferences need to be discussed or on display. I'm also not entirely comfortable with the term bisexual because it assumes only two options. I know from reading and talking with others that two is not all there is. I suppose I fit more in the category of sexually fluid, which some contend is under the bisexual heading. I'm not Miley Cyrus who is in your face about this expression of sexuality, but I do believe in being attracted to a person not a gender. Looking out over the crowd at the PRIDE events, I couldn't help but reinforce my belief that everyone there and elsewhere deserves the chance to love and be loved because we're all just humans trying to figure out what life and humanity means. The connection to other human beings struck me as one of the most important aspects of gathering together over PRIDE.

Indeed it is.

I cannot say that if my husband and I had not come back together that I wouldn't have dated women. I have not met a transgendered person that I am attracted to yet, but that's not to say it won't ever happen. I also know it's because of some very brave people that I can recognize this in myself and say it in my own understated manner. I may not be loud. I may "pass" as they say of us fluid ones who are married to an opposite sex partner. I do know though that I am fortunate to be alive in a place where marriage equality is possible. I'm also thankful to have had the chance to participate in PRIDE.

Dear Body That I have Royally Pissed Off

Dear Body,
 I am so sorry I pissed you off. I'm sorry I forget to treat you right when I go on vacation. I am sorry I don't find ways to bring all the treatment regimens and therapies with me on road trips. Let's face it though. Coconut oil doesn't travel well and eating out is not always easy to adhere to Paleo/Primal foods.

OK, fine. I could've made better eating choices. I stand by the statement on coconut oil though. Any time you want to cease the mouth sores, that'd be great.

I am sorry I drank so many teas with sugar--real cane or otherwise--instead of just water while we traveled. I love Peace Tea and just shouldn't have tried for the other brands. I should have only enjoyed one or two Peace Teas instead of looking for one every time we stopped to gas up on our trip. I know too much sugar makes my joints ache and my muscles scream, which they were going to do anyway because it is a long ass haul in a car from here to Denver, yet I still partook and told myself that I was just keeping hydrated because I was on vacation.

I suppose I could get one Peace Tea and bring home brewed tea in a cooler to avoid the sugar.

I'm sorry I ate buns with my ever-so-delicious locally sourced and grass fed burger in Lander. I am sorry I had a locally produced bun on my locally produced sausage at the brew pub in Billings. I'm sorry I indulged in a Lucille's decadent biscuit with homemade jams. I'm sorry I had biscuits and gravy instead of just eggs and sausage and yogurt at the hotel breakfast bar. I'm sorry I ate the homemade biscuits from the adorable little family owned cafe in Billings.  I know these wheat filled indulgences cause my gut to cramp and eventually stop moving as they should, but I did it anyway because I was on vacation.

My gut screaming for mercy.

I'm sorry I ate so many potatoes. I told myself since Whole 30 and Paleo allow for them now, it'd be OK. I'm sorry I ordered the fries with my burger even though they were long and fresh  cut at the pub and not frozen. I'm sorry I didn't ask for the potatoes to be left out of my Creole scramble. I'm sorry for not opting out of the hash browns with my omelette. Russets aren't very nutritionally sound I know, but they make delicious hash browns and fries. I guess I just missed them too much to worry about the consequences just then. I did realize the error of my ways on our last day and I ordered a side salad instead of fries, but the damage was already done. I have no defense for my actions other than I was on vacation.

 

Ashamed goat hides its head in shame.

I am sorry I didn't wear long sleeves in the car. I am sorry I didn't faithfully count the hours in order to reapply that floral scented sunscreen my husband bought. In his defense, he didn't know it stunk to high heaven. It was Neutrogena after all. It should not have been so revoltingly floral. But it was awful, which is likely why I was loath to reapply. I did wear the zinc faithfully on my face. I also wore the floppy hat. However, the small, red blistery things on my arms tell me that I came close to lesions. I also know that some of the muscle soreness is likely from the sun exposure. I am purchasing UV cover-ups for California. Truce?

I'll do better. Please?

Anyway body, I hope you find it in yourself to forgive me soon. The constipation, bloating, cramping, aching, soreness, and generally mind-blowing fatigue are all at about maximum tolerance. You've risen up and smacked me hard. I know you're angry. I know I must do better. I will do better. Please forgive me.

Sincerely,

Me 

You Can Deny, but I Can't

Rape culture. Much like a lot of controversial topics, people will want to deny that rape culture exists. However, I’ve seen and experienced enough incidents to convince me that rape culture indeed exists whether you want to acknowledge and accept it or not. I present the following for your consideration.

Even this meme seems to have thoughts on the issue.

A story went viral over social media recently. Three young women witnessed a man put something in a woman’s glass of wine when she wasn’t looking. These women could’ve written it off. They could’ve remained silent. They could’ve done a lot of things that would’ve ultimately led to another woman being raped. The woman in question considered the man one of her closest friends, and yet he did this. They had him on video clearly drugging her wine. Thankfully, the witnesses spoke up. A society where this man could be on one hand her close friend, yet also willing to drug her in order to have sex with her is rape culture.

Skeptical corgi does not think you know the meaning of the word "friendship," sir.

In a cruel and twisted turn of fate, one of my friends on social media the very day she shared the previous story, experienced the drugged alcohol scenario herself. While out with friends, someone slipped something in her drink. This drug changed her behavior drastically. Her fiancée and friends knew her behavior was not just her being a little too intoxicated. They knew something else was at play. This wasn’t an example of blacking out. She simply had not had that much to drink. Luckily she was well-protected by her friends and fiancée and they got her safely out of the situation. She has no memory of the evening; that’s a hallmark of someone drugging your drink. A society where a woman in the safety of her friends and lover cannot enjoy singing, dancing, and yes- alcohol- without fearing being a victim is rape culture.

You say you want to go out with friends and have a good time without fear of being drugged? Sorry, but that's not in the handbook anywhere.

A few months ago, my dance troupe and I were making the rounds visiting with patrons at the restaurant where we dance. Most people are respectful and polite and some are downright chatty when we go around to talk. Our leader’s 13 year old daughter has begun accompanying us. She helps us get pinned into and out of our costumes, she helps with music, and she helps us when the dollar bill tips get too much and start falling out behind us. She’s cute and she has a nice figure. Well, one night as we were talking to patrons a fellow who had too much to drink asked about her. Our leader explained that her daughter was an apprentice and what her role was. Then things got awkward and strange. He commented on how attractive she was and asked how old she was. I know my teacher well, so I could hear the tension when she curtly replied, “13.” The man though then stammered and made matters worse by remarking again about how attractive she was and something about wanting to be back in middle school. At that point, my leader stopped the conversation and we left to another table. A society where a 50 something year old man can make comments about how he’d like to date a 13 year old girl and it’s ok to do so is rape culture.

She's 13, you jackass!

A few years ago, a friend of mine was raped by her boyfriend. She had a bit to drink, and she said no. He didn’t listen. I remember thinking at the time that I hoped she’d make changes to her life, not because she was at fault in anyway mind you, but because the violence of rape devastates a person’s perception of self. It destroys confidence and self-worth. I feared that this rape would mean not only her violation of body and mind, but also her death. I feared she would choose to die rather than continue to fight. Fortunately, she did choose life and she’s living a much better life far away from that man and from that place. A society where a woman cannot say no to a spouse, lover, or acquaintance and have it be respected is rape culture.

Spare me your excuses. Marriage, engagement, dating--none of it means you are entitled to ignore when she says no.

Over the weekend, I also read about a so-called man of God who stood on a campus preaching against homosexuals with a sign that read, “You deserve to be raped.” Because he thinks he knows the mind of his god, he believes it gives him the right to condemn a whole population to horrific violence. He thinks he has the authority to pass judgment on these individuals, and that they obviously will bring it on themselves to be raped. A society that tolerates such hateful speech, which condones and encourages rape upon individuals, clearly is rape culture.

WTH, dude? Cat is annoyed at your attempt to use religion as an excuse to promote and excuse rape.

My husband and I are guilty of rape culture, too. I tease him about being a pervert and he makes lewd comments about tying me to the bedposts so I can’t get away. I call him a dirty whore of an old man and he remarks about me not remembering him strapping me down and sticking his cock in my mouth because he used a roofie. Again, he’d never do anything like that, but the fact that we make jokes in private doesn’t make it right. It’s just more evidence of rape culture.