When Remission Ends

What do you do when remission ends? When the ability to enjoy what life has to offer becomes a burden rather than a blessing? When the freedom to do what you want gets sidelined by the fear of "what if I can't"? When all your strategies for managing fail? It's a place I've found myself a lot lately; most recently it's the lupus being an asshole.

Sorry, Goats. Shoulda told you to cover your ears I suppose. 

But it seems like you have them covered already actually.

My husband and I have some painting left to do on our house. Unfortunately, the rains of June kept us from getting it done in the cooler weather. Now it's just plain beastly outside with a relentless 90 degree average and high UV index. This week is promising more around 80 degrees. Pretty sad when you get excited for the relief of 80 degrees. Needless to say, I have diligently implemented my prevention by waiting until the area I am painting is in the shade, wearing my zinc oxide sunscreen, drinking plenty of water, wearing my UV protective clothing, and a hat. Last summer, this was enough for me to kick some serious tail on the painting. This year though, I'm ready to collapse. I spent a lot of time outside yesterday getting the east side of our place done. Today I ache; I got fatigued trying to make breakfast; I feel like I have the stomach flu. Consequently, I am inside, taking it easy, and watching Netflix. My preventative strategies aren't cutting it.

Thanks, Dean. I needed that.

Last week I had a belly dance gig for the Chamber of Commerce. There was a time that I was able to dance a 20-25 minute set. I only had 3 minutes to worry about this time. Yet, I came home and fell onto the sofa afterward. This is after the practice session the day before where the hit-wall-fatigue made me cut practice short. I was stumbling, incoherent, and decided trying to go to the store afterward was not the best idea. I had to sit in my car for a while in order for the AC to revive me a bit. Heat sucks. My performance wasn't great either. I don't know if the audience noticed, but I sure as hell did. I'm torn between making myself go to the intermediate classes on Wednesday to get back in shape or just accept and do the best I can with once a week classes. I know my skills have waned over the past year and half. I need a tune-up. Two summers ago I was practicing 3-4 days a week and my skills were good. With my lupus being an asshole, what do I do about this art form that I truly love? It's avoid the heat and hope the strain isn't too much I guess. Maybe the cooling neck strap my husband used to wear roofing will help. Of course, I'll have to buy a new one since he's lost his. It's a new idea anyway and doesn't mean withdrawing more from activities.

That's right, Blanche. You got it.

One thing I've done since the remission ended is to add to the preventative measures. I always do the sunscreen, but I've worn the UV clothing a lot more. I do the self-care with taking a break and honoring the time I need to recover. I shorten my to-do list and remind myself it's ok if not everything gets done. I stay inside as much as possible to stay cool.

This hermit crab might be on to something.

I'm also trying to keep my sleep pattern fairly consistent with at least 7 hours a night. Although to be honest, 8 or 8.5 has been better. I drag ass every morning and still feel out of it. I think that I should start taking a short walk in the morning like I did last summer. It's a way to wake up before the coffee and get going so I get that all important moderate exercise in. It'll be much more of a challenge than it was last summer, but sleep and wake up routine is a security and possibly an easy win to give me that boost to do more.

You understand me, Cinderella.

Moreover, I've tried to exert control over the situation. During my remission I ate a low-carb, plenty of veggies, good fat diet. I felt amazing! I had more energy than I knew what to do with. Consequently, I have tried and tried to control more of my eating habits, but I am still so fucking tired. The harder I try to use this eating plan that changed things so much for me, the more frustrated I become. It's still the best eating style for me I know, but I hate not feeling in control. I hate that it's not improving things. I like to think I am easy-going and can go with the flow, but right now I'd really like to be the dominatrix of this disease. But I am so totally not in control. At all.

Maybe the hat is what I need.

Instead, I have spent inordinate amounts of my summer on the sofa with Netflix. My cats and I have cuddled so much that when school starts, we're all going to be in snuggle withdrawal. I always knew that remission would end. Even when I think I've won a small battle against lupus, it rallies. For example, I had to put a healing patch back on that lesion on my nose because it was starting to get inflamed again. I'm reading blogs by people with lupus again, too. Looking for ideas from others with the same struggle.

Aw! Thanks, Heart. 

Lupus can be an asshole. I don't know how long this flare up of symptoms will last. I don't know what else I can do at this point except keep taking care of myself as I have been. One blog I read mentioned how the pep talk phrase "Don't let your disease define you. You define your disease" rings hollow. Honestly, that phrase just makes the person saying it feel better. Me and others in a flare would slap you if only we could muster up the energy. I guess when all else fails, you just sit back, take care as best you can, and wait for lupus to stop being an asshole.   

 Are you wearing sunscreen, Moose? Make sure you reapply, too.

Cost of Living

I recently returned from an annual Friendcation with two of my oldest and dearest friends. We started gathering each summer after the death of one of their fathers. I relish these retreats and time to connect with these friends that I've known for 30+ years. This year we went to a cabin I found close to the Idaho border. Near the end of our trip, one of them asked me what the circular shape on my nose was. I replied that it was a lesion brought on from a rash thanks to the sun and the lupus. I had put a healing patch over it. She then proceeded to tell me that she has another friend who has lupus and is in the sun all the time and even runs marathons with her. This friend apparently does not display lesions or rashes or indescribable fatigue after too much sun; at least, not that she shows to my friend. My friend didn't say it, but the implication was clear: I was doing lupus wrong.

Yeah, I cast a little side-eye too, Goat.

Despite my annoyance, I calmly said that her friend might have a different form of lupus since there are now more identified beyond SLE (which I have) and discoid. I also mentioned that I didn't used to have rashes and that it had been years since last I had a lesion. I further suggested that her friend may be in remission as I was for years. I don't know if she'll take any of that into consideration and perhaps not compare one person's lupus experience to another's. I hope she does, though. I hope she looks into the disease a bit more to gain some understanding.

I don't think she did either, Castiel. Check out the Lupus Foundation of America

 and it might be clearer.

As I drove home with my other friend, she inquired if I was a spoonie. I had no idea what the hell that meant, but I had heard other people I know who have chronic illnesses use the term. She explained it to me, and I looked it up when I got home. Essentially, in order to explain lupus to a friend, the person who coined the term used a handful of spoons and had her friend describe a typical day. With each activity, the person with lupus took another spoon. I find this explanation simplistic. I also think it could be a way to start to put someone in the shoes of someone with chronic illness. However, this explanation seems only to cover fatigue and fatigue is only part of the story.

You might be a wee bit too enthusiastic for the rest of the story, Steve.

I already wrote about the sun stupid incident that happened on my previous trip this summer. Following that excursion, I knew I needed to behave myself in the sun, so when I went camping the following week I made sure to use the sunscreen and hat prevention. It was cloudy and 65-70 degrees and our area had a lot of shade, but I also know that cloudy days can actually have increased levels of UV intensity. Unfortunately, my prevention wasn't enough. I had a small rash across my nose when I came home. From that rash burst forth the lesion. It seriously was a deep crater-like thing that would scar if I didn't do something to protect and heal it. More sun would just make it worse. I packed my zinc sunscreen, my UV blocking shirts, and my big yellow hat for Friendcation 2018. Spoons do not explain this.

Yup. That's a good analogy.

My friends and I went to get huckleberry shakes on our Friendcation. It was hot outside and my friend with the other lupus person in her life really wanted to find someplace to walk in addition to the shake. Since I don't live in the area, I had no idea where to go. We stopped for our shakes and this gal wanted to take our shakes and go walk around...in the sun...and the heat. I hadn't brought my hat since I hadn't anticipated the walking around portion of the day. I know; shoulda brought it anyway. The walking around came up after we had decided to go drive in search of milkshakes. Holding the  shake was making my hands ache thanks to the Raynaud's, so I was sitting on them to warm them up. My friend suggested we go walk and enjoy our shakes at the same time. I asked to please stay and finish our shakes first, which we did. One condition at a time, right? I pat myself on the back for speaking up without mentioning the Raynaud's. Didn't want to draw more attention to how sick I am. It's that not wanting to burden or appear to be making a play for pity. Spoons don't account for this.

Just watching you do this makes me hurt all over, Sam. 

Also on our trip, we went to a hot springs. We opted for the cooler of the several pools. Thankfully, I didn't have to be the one to speak up about how I melt in the warmer waters. I don't last more than 5 minutes in hot tubs. I'm really heat sensitive anymore. I had wanted my UV long-sleeved swimsuit for this trip, but it hadn't arrived before I left. So, I zinced up and put on that big yellow hat. Yes, I wore it in the pool. At one point, I felt my skin starting to sting, which is a sign that I need to get out of the sun. It feels like a bunch of pins sticking me all over. Spoons don't cover this.

Now that's a Sting I can handle.

After arriving home from the trip, I crashed. My husband kept asking what I wanted to do about dinner. My mind was so fogged I really didn't want to have to make the decision. Having to make that decision was seriously more than my fatigued and pain-ridden brain could process. With my head pounding away a migraine and my body slowly crumpling under its might, I made the call on dinner because it kept getting thrown at me to figure it out. It felt like the most difficult decision of my life right then. Spoons don't describe that.

I don't wanna! Don't make me!

While researching the spoon theory, I read a blog that criticized the woman who came up with the comparison because if things like brushing her teeth or doing dishes makes her lose a spoon, she's not taking good enough care of herself. It's not just those without conditions who judge; we judge each other. I've done it, but I've learned that compassionate understanding is better. I still catch myself in judgment mode, so I have to step back and remember how much the judgy attitude hurts. I take the best care of myself as I can, but still I have flares. Sometimes, it is a struggle to get out of bed and take a shower. When I was in remission, it wasn't hard at all. But things change.

As if I have a choice, right?

The cost of living our lives changes. Sometimes, the cost of living life means increasing prevention methods. Sometimes the cost of living is dealing with the aftermath despite the prevention. Sometimes the cost of living is figuring out how to graciously handle a thoughtless remark. Whatever the case, sometimes even a silver spoon can't cover the cost.

Sure. You're pretty good at fence hurdles, but can you run a marathon, Moose?

Cynical Me

It's summer. I have a lot more time to think, which means my thoughts are a bit all over and trying to settle on one topic for a post is almost impossible. Consequently, I shall share the big items that have been swirling around the attic like the accumulated cat fur balls that drift across my hardwood floors.

My dear, Goat. I bet you could stir up some fine fur balls, too.

On the migraine front came a glorious thing: I'm actually even on pain days versus non-pain days for the last 90 days. I haven't been even since I started using my migraine app, which means that for the last year, my headaches have outnumbered my non-migraine days; often it was a 50-40 or worse ratio. Until now. It gets even better when I look just at the last 30 days. I have 10 attack days and 20 no attack days. That's amazing to me. It's hard to say if it's the Botox or if it's not being at work for the last month. I'm inclined to think it's the no work thing since the first 6 months on Botox did not yield such a dramatic decrease in headache days. I remain cynical about Botox's off-brand use of this poison and I believe I likely will suffer greatly when I return to school, but for now I will enjoy it.

Oh thanks, NPH! But you're cleaning up the confetti strips.

This country is a mess. I don't know how else to put it. We have an inept, ego-maniacal charlatan of a president who is protected and counseled by intelligent, unscrupulous people who don't give a damn about anyone but themselves and the people who give them money. What the fuck are you supposed to do about that? I don't know that much of anything I do will change things as they are, but I think I still have to try. I can fax, call, and show up to protests and hope that my voice along with all the others will get through to the idgits. Those who will listen, will. Those who don't give a damn, won't. But when the dust settles, I want to know that I did something. That I took a stand against this administration's policies. The Asshat in Chief is going to be in my city for a rally this week. I will be out of town, but a group of like-minded individuals and I have obtained tickets to the rally and plan on not showing up. We did this when he showed up to Billings prior to the election. I enjoy this plan even though he likely will tell the masses a lie about how huge his audience was. We'll know it's a lie. Again. As cynical as I am about those in power right now, I find grace in being able to resist because it is an American right that I value.

I'm not above name-calling when it comes to the bastards either.

I really want to pull back even more from my online and social media participation. I've written before about how much I've pulled back already. I enjoyed not being near the social media ruckus while camping last week. It pleases me to be disconnected. I have all my news organization apps on my phone so I can keep up to date on the true news of the day. Two dear friends of mine are coming for a visit and we have a cabin out in the boonies. One of them has had almost no online presence for the last 6 months and the other is on the social media almost non-stop, but trying to unplug, too. This cabin lacks wifi. She may lose her mind and I will be uninformed, but hopefully we'll all get some peace along the way Despite my knowing I need to step back, I still post articles I think are important or that people should read during my allotted time on social media. What can I say? I'm a teacher. I can put information out there in front of others, but if they don't read it, so be it. Some might see it and read it despite the noise that clogs newsfeeds. I don't expect that what I post makes a difference to anyone other than me. A person wiser than me observed that "[My] work is not to drag the world kicking and screaming into a new awareness. [My] job is to simply do [my] work... Sacredly, secretly, and silently...and those with 'eyes to see and ears to hear' will respond." Even cynical ol' me sees the good purpose in that.

Perhaps. But let me have this one, Kid.

And that's how things stand in my brain right now. I suppose that makes this current state of being hopefully cynical, or cynically hopeful. I don't know which is better or closer to the reality. I do know that I am looking forward to five days with my two oldest friends in a cabin without wifi. 

Maybe we'll see each other, Moose.