Flare Alert

Started noticing it is getting harder than normal to regulate my body temp, noticed some cognitive slowness, my hip is getting inflamed and painful, my knuckles are slightly swollen. My legs have been jerking and I feel fatigued.

Heat

This morning I lay on the couch under a fleece blanket. In 5 minutes I went from cold, to hot, back to cold. I didn't move or adjust the blanket or the temp. It's SO FRUSTRATING. There's no control. I have no control over anything. I can try to take all the right steps to have a good day. Like, if I want to go to Disneyland I could spend two or three days resting and trying to manage my nausea so I'd be able to eat at the park. But no matter what I do- there could be a near accident on the freeway which would clench up my stomach and drain all my energy leaving me in a wheelchair trying to sip at water all day in the Happiest Place on Earth.
I don't want to turn into a fitness freak, examining everything I eat and having to stick to a super rigid schedule. I'm an artist, I just take every day as it comes and try to create and explore and imagine.

Reason #24860 Lupus Sucks

Having to wear my wedding ring on my wrong hand because I'm not able to gain back the weight I lost and it's too loose on the left hand.

Temper Tantrum

Today, I tried to do something I haven't done since my last long remission. I went out in a strange place and attempted to find a bus and a place to go. Big mistake. If I hadn't spent the past two days laying down watching Netflix I would have lost it and broken down sobbing in the street.

First, I checked the map (trying to find a pharmacy, needed nausea meds so I could eat and take my real meds) and got it loaded on my phone so I could just check the GPS marker and follow my route. Well, that went south as soon as I went outside and my phone decided it had no idea how to connect to the network. I asked a gardener how to get to Reseda, he kinda pointed me in the right direction. I finally get out of this stupid neighborhood with NO sidewalks and onto a main street that sounds right and I am somehow around the corner from the house. WTF? I started to cry at that point and it even looked like there were no sidewalks on the major road. So I went back home. I was so mad that I literally had a tantrum. I couldn't stop myself, I was sobbing and kicking my feet and screaming NO NO NO NO NO. I didn't know what to do. It should have been so easy. Follow a fucking map. Get on bus.

I sat down for a while and decided to try again. I went the right way this time and got down to the bus stop with minimal crisis. Then I got impatient and started walking the rest of the way. I got one block out of 6 and decided to stop again. I checked Nextrip and it said the next bus wasn't for 33 minutes!! So I found a gas station and got a bottle of water. As I was talking to the guy, he goes "oh! there's the bus! go!" I grab someone at the stop and ask what the deal is with transfers and fares. She is REALLY nice and actually asks the driver to give me a fare card. I love riding the bus. Its freeing and reminds me of college. I'm happy now. I'm getting to where I need to go. I get to my stop and hop off and get to the pharmacy.

I don't have my prescription. It's an hour away and I have no car. (duh, bus.) I go outside and finally lose the fight against collapsing that I fight every time I have to do something stressful. I almost managed to turn it into "oh im just sitting down right now" but I think the clerk saw. She came outside and asked if I was okay and said that I could call my dr. for a copy of the scrip. But my dr. is an hour away too. So. No meds for me. I have to get back on the bus and then 10 minute walk back to the house. And then my hip starts hurting. I'm limping by the time I get inside. I will probably be exhausted and unwilling to do anything for 3 or 4 days and then I will be too grumpy that I didn't do anything so I will just keep on staying inside.

I have to wait for my husband to come visit so he can bring my scrip. But I feel like if I ask him to come down, I'm wasting gas and his time and just making myself into such a bother. I'm so angry to be sick.

Hi

My name is Megan. I'm sick. I've been sick for over 10 years and I will always be sick. Sometimes I'll be in remission, but at any moment, I can relapse. I have SLE and fibromyalgia. I spend most of my time resting and trying to keep my energy up. I often feel like just to keep up I have to run and run and run and I'm only able to recharge just enough to keep going. The title of this blog refers to my grandpa's advice- "If you're going to run your car on a quarter of a tank of gas, you better run it on the top quarter." He meant it literally, but I think it is a good reminder for chronically ill people. Don't make yourself sicker by trying to keep up with the Joneses. I'm not a Jones. I'm a Cottage and this is my quest for a comfy cozy life. (get it?? cottages are cozy????? ok sorry moving on...)

I belong to a group on facebook called My Invisible Journey and even though I like posting there, I felt like I was posting a lot and I don't want to bog everyone down. I want to be able to write out longer posts too if I need to. I don't really know what I expect to do with this or what I want out of it but I'm hoping that if I can just write stuff down it will help. Maybe it will help someone else to know they are not alone or maybe that all the wierd stuff they feel isn't in their head or because they are weak but a hidden disease.