Maintenence

Everyday I just try to stay afloat. When I have a good day I try to make good use of it and when I have a bad day I don't push myself so I can get better faster. I'm afraid to make any changes or do anything like start to exercise because I don't know what is good for me or what will cause damage. I'm still struggling with remembering that people don't see me as sick. Everyone just has this idea of "dainty Megan" getting tired, not being able to cope with big events, anxiety, depression and I don't know if they are able to adjust to "sick Megan" whose body is self destructing, who isn't lazy. Only my husband has seen my major decline and so even my mom says "why are you walking wierd?" um.. what part of widespread inflammation don't you get? There's such a disconnect between reading about something and facing it in real life.

I'm in so much fucking pain. I feel like my skeleton is going to fall apart.

Feeling better

I've been feeling better the past few weeks. Still have minor issues- occasional nausea, fatigue, fibro pain. But still so much better than the past 8-9 months. My mental health seems to be a lot better, still have ups and downs. Might be just accepting some things like OCD and anxiety rather than trying to overcome them. my brother made a comment about how everyone in the family is healthy and I just wanted to laugh. Trying to get rested before wasteland but I just know that there is no way to predict how i'll feel even if I do all my resting and get hydrated and all of that. Feeling better is good, but I just keep waiting to feel worse. The good spell can't last forever.

chugging along

I am in a high energy swing currently. After my period, I felt like my brain started working again. I'm still feeling a little lazy but I think I'm starting to tell the difference between lazy and fatigue. Trying to make small changes in my diet. We got so frustrated with the crazy charges for doctors visits and the stupidity of the insurance system that we kind of stopped looking. I need to get back in and get diet and exercise recommendations. I am feeling pretty good except for the fatigue, but I just keep waiting for the next symptom to kick in, the next system to fail.

Middley

I feel middley. Not quite well but not quite sick. I think this is the most tedious part of having lupus. This is the part that makes people go "you're just a faker. buck up loser." I can do pretty much everything, not particularly fatigued, not really in pain but without the energy that marks my "good days." So I just feel like a blob on the couch, not feeling like I can indulge in the real "sick day" behavior but not feeling like doing anything else either. This is the part that drove me crazy pre-diagnosis. This just feels like I'm too lazy to do nothing. I would really beat myself up for day like these and I still feel sort of inclined to do so. I guess I need to take it in stride with the good days and the really bad days and just keep trying to eat enough nutrients, get my little mild exercise and keep doing things that make me happy.

I *can* do it.

I can take one step onto solid ground without worrying about what will happen in a mile. I can make small changes that add up. I can take one day at a time and I can move forward without being dragged down by what happened before. All that matters is what I do today. All that matters is what's best for me.

Flare Update

Today I have a low fever and I think I might be headed for an ear infection. I've been trying to rest and conserve my energy. It's so hard to stay in a routine of eating sort of okay when I just want to lay on the couch. I think I really need to look into making single serve freezer dinners.

The Sun

Recently I've been feeling a stinging burning sensation when there is a patch of light coming in through the car window onto on my bare arm. Yesterday I worked out in the sun for several hours and was getting pretty dizzy and just tried to move slowly and drink water. If I become sun-intolerant Wasteland will be impossible! I'll never give up being a Guard but if they see me suffering, they just won't let me hurt myself. :( The one place I feel like I really belong and matter and lupus might take it away just like everything else.

Loopy Lupie

I feel trapped. I've always felt like I was "outside" and the exception to all the rules. Part of that is I am very contrary. If I'm told to do something I don't want to fucking do it. If everyone likes something, I hate it. Part of it, now I'm finding out, is because I am different. I have lupus. My body is actively attacking itself and is not behaving how it should be. I have no way of knowing what I should be like. I've had weird symptoms since I was I have no way of knowing what it's like to make a plan and follow it through to completion. Something always happens, I get fatigued, I get confused, I get depressed. That old line about it taking 21 days to form a habit does not apply to lupies. I have a couple good days and I think I've finally figured out a good routine or settled into some nice habits. Then all I want to do for a week is lay around and watch TV. I have a hard time not comparing myself to other people, and other lupies. That's bad to do, this is the disease of a thousand faces and what I can do one day doesn't have bearing on what I can do the next so what someone else can do has even less importance! I like to tell myself that my refusal to push myself has kept me from getting sicker. I think that is partly true and partly laziness. Just like everything else in my life- who the fuck knows what is going on? There are all the things you have to do to keep moving forward in life like brushing your hair and washing your pits and trying to make your meals and keep the cat hair from taking over. And then there is everything you can do to move upwards like learning a skill or organizing your closet or not being such a fatty fast food junkie. Being sick makes it a daily struggle to keep moving forward without crumbling. Moving upward becomes practically impossible.

Whole 30- Day 2

Hungry. Got a couple things at the farmers market. I have no idea how to make scrambled eggs on the electric range. My pill box is empty and I don't feel like filling it. My pills are about to run out but I won't need pills any more because I'm eating clean right?? Yeah. I'm so sure.

Whole30 Day 1

Day one breakfast: two scrambled eggs with bell pepper, pistachos lunch: 2 oz chicken with lemon and paprika I'm fucking starving. I'm sleepy and I can't focus. I don't have enough food in the house. I hate stupid vegetables. I want a big plate of pasta with garlic bread.

its 9:30

So its bedtime! I can not push myself until I absolutely have to. If I just pushed a little bit every day I wouldn't have these huge disasters at the end of a deadline. Goddammit.

A Couple of Things to be Angry About

being too poor to buy insurance and too rich to receive assistance
being too well to be disabled and too sick to actually work successfully

coasting...

I've been housesitting and dog sitting for nearly a month now. Basically, my life over the past 9 months has been: Prep madly for Wasteland and end up heading out a day early, and pulling a trailer for the first time. in the dark. Get home from Wasteland and immediately begin wedding planning. Stress from planning causing a HUGE flare and finally get diagnosed. Have wedding. Go on honeymoon. Day after honeymoon- find house. take two weeks to pack and move. take two weeks to unpack and leave for this month long job. since november 2012 I haven't had any time at all to think about anything health related. I've just been coasting on the meds and trying to not exert myself overly. I haven't had time to do anything for myself like relax or improve myself. its fucking wierd. since my husband and i moved out together, I felt like i havent relaxed once except maybe at Wasteland and on our honeymoon. I might look like im reading a book- but i'm really stressing about the bills or chores. It's no way to live and I really want to get to a place where i feel good, i'm doing good, and i'm making good (on my bills). I don't know how but I feel like its impossible. I'm trying to work two jobs and i feel so worn out and it's only the second week. I try to do all the meal planning and eat right and I end up drinking cokes and eating cheezits. Or i try to exercise and my fatigue and frustration with being sick (laziness) kick in and i watch 3 seasons of Lie to Me. I'm too afraid to try different therapies like diets or exercise routines because I dont want them to fail and I don't want to make my miserable life more miserable by denying myself my favorite things.

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.