Sunday, January 22, 2012

How things have been rolling

Happy end of the "snowpocalypse" to those who live in the western Washington region. It was pretty until the power went out and then well... No electric blanket makes for a super cranky Katyann. I am not a self heating person and generally require a lot of warmth to feel comfortable. Maggie maye was my stand in but I was thankful when the power returned because goll that dog can snore.

Things have been okay with me health wise. I have been having some small discoid issues along with the swelling now. Little round rashes are appearing here and there. As long as I do not turn into a Dalmatian like I did with my first period of skin involvement I will be fine. If I do... I guess I know what I will be for the next costume party I go to. The swelling in my feet and ankles has still been intense. It seems to get much worse as the day goes on and by nightfall I know once my shoes are off (if I can get them on in the first place) they will not be going on again that evening. Hair has been falling out everywhere, joints have been stiff, puffy eyes depending on the day. Just more of the same jazz. There has been an unpredictable cycle in the past week of okay/not okay than back to okay. I can be perfectly fine for a few hours and then take a nose dive. Especially with the pain... A couple nights ago I went to sleep feeling alright but woke up a few hours later in a tremendous amount of pain radiating through my entire body. Today I had a fair amount of pain in my spine and hands but I am getting better at tuning it out as best I can during the day. However at night when I slow down and settle my mind... The pain becomes a lot more noticeable. It's like being distracted while getting a shot, the shot doesn't seem as bad. Except for in this case it is a never ending full body stabbing.

In the winter months my raynauds tends to get worse. I wear woolen hiking socks, I exercise as best I can and try to keep warm. However with the swelling and poor circulation a bit of one of my toes has turned black. Permenantly so. Does it hurt? No. Does it look good? No. Does it concern me? Not really. This is all just part of living with raynauds and lupus. The most awful feeling I experience on a daily basis is when I take a shower and can feel my toes tingling. In my mind I know they are tingling because they are warming up and finally getting the proper circulation they need. At night I have been sleeping with my electric blanket on its highest setting and still have had troubles getting warm. Unless of course I am running a low grade fever, as I do sometimes and then even a sheet can be too warm.

My spoons have come and gone as they like. Some days they're around and then other days they go skiing. I have been getting some curious questions about how I delegate my spoons or how much a certain task takes. First off, I always have a running list of needs and wants. Needs always come before wants. For example: I need to take a shower, I want to sew. But I cannot do both today due to the number of spoons I have. What makes me mad and frustrated is when someone will spring a size able need on me (my mom is a master at this) and I already have all my spoons budgeted out for the day. In most cases I will do the sprung upon need for the other person but it comes at a cost of not completing another need that probably really did require some attention. If forewarned a day or two in advance about a desired need, I am able to plan and factor it into my spoon budget for the day. Making things go a lot smoother. Many people probably do not think in their heads "do I collect eggs or take a bath today?" in terms of energy, maybe time though. On my list of daily needs is eating, hygiene, feeding animals and medicating. Those are the most raw and primal things I pretty much need to do in a day. Sleeping is a zero spoon task. Second level needs might be dressing (lounge clothes) or brushing my hair. There has been many a day where I have not brushed my hair or gotten past being dressed in lounging clothes and I have exposed myself to the general public. Third level needs might be something like exercise or smiling. I know this sounds slightly Neolithic, but it is true. Then comes the spoon values for living through the day. Something like typing on the computer I can make one spoon last a very long time, where as that same spoon could be burnt in a matter of minutes by getting the mail. Generally the more mental or physical computing power it takes to do something, the more spoons it takes. A spoon is generally good for: eating a meal, doing a simple task (taking out trash, practing piano for 30 minutes, etc), typing on the computer for an hour, dressing/grooming, a shower, or sewing for 30 minutes. A two spoon task might include but is not limited to: toaster fires, tending to my flock of chickens, reading a book for a half hour, driving to and from school, a calm hang out time with a friend, singing, or doing laundry. There is generally one three spoon activity per day in my schedule. Three spoon activities include riding Cajun, running or going shopping/out and about. Four plus spoon activities are rare for me to participate in but on occasion something like running an event or going to the fair. Subtract spoons for stress, flares and pain. Generally my spoons are halved or less when any of the afore mentioned are in play. Basically my spoons are a very delicate balancing act where I feel like the circuse performer with the skinny little dowels which hold up spinning plates.

Inside I have this burning desire for control and stability in my life. The ability to do what I want, how I want and when I want. I am not talking about it in terms of "teenage liberation from parents death grip" type meaning. What I mean is to be able to get up and do what I want to do in the day without having lupus changing the schedule constantly. To be reliable and to feel in control of what is going on. To not have to "see how I am doing tomorrow and then I will get back to you.". With a crucial element of my life out of my control I feel like I am sliding away. Admittedly lupus does not have the steering wheel of my mind... Nor has it found the neutral gear for my body. But this whole changing all the time thing has been hard on me lately. Not that it hasn't always been hard but I feel worn thin in some places.

Many spoons, lots of hope and a peaceful week I wish you all. If you are wondering why I am up so late on a Sunday, the "not okay" pain thing took over a couple hours ago. Thankfully good drugs are at my disposal and I did choose to use them, so this is only a temporary time of great discomfort for me. Agape :)

Sunday, January 8, 2012


Ladies and Gentlemen: the glimmering shining things you see up in the sky right now is in fact not stars but little pieces of Katyann after she exploded. Do not worry, for this is only temporary and the bits of Katyann should fall to earth shortly. Please use caution while operating heavy machinery, for it tends to catch on fire while such a phenomena is occurring. That is all…

This past week has been one of those weeks where I quite literally just wanted to crawl in a hole and die. I was reminded, oh so reminded by lupus that it’s still there and just as brutal as before. Though there were some “new and improved” twists this week. Lupus’s definition of “new and improved” sadly does not align with my definition of “new and improved.” So things have become a bit interesting, for better or for worse. It seems as though my kidneys have joined the improvement party and I couldn’t disapprove more.

Monday morning came like a bat out of hell. Actually I really don’t remember much of Monday morning because I was maybe conscious for ten minutes of it. I remember getting up, and feeling like death. My hands were swollen, my feet and ankles were swollen, I looked like one of those “before and after” posters for drug addicts. As usual I also weighed myself and that’s when a real shock hit me. I had supposedly gained 8 pounds in less than 24 hours. I am no idiot and I also didn’t eat an entire chocolate cake (my scale is new and accurate!) so this was alarming to me. But I was a bit too exhausted to care, so I crashed until later on in the day. When of course after being up for a little bit, I crashed again. Do you see a theme going on here?

Tuesday came and as the sticky note on my bathroom mirror reminded me “it’s Tuesday all day today!” Pretty much the same thing happened on Tuesday as Monday except I was up for a bit more time in between crashes. My weight was up even more, which of course really started to concern me. Also the whole input/output thing has not been what it should be (it still isn’t.) More swelling than the day before, more misery and the pain had hit a point where even thinking hurt.

By the time Thursday rolled around, Lupus had been going at it with it’s little demon dance for four days. It’s really annoying to have my hair falling out everywhere, intense fatigue, joint pain (I didn’t even know I had so many joints), swelling/fluid retention and just an overall feeling of sheer death. It was time for me to get phone numbers to the UW… except my Mom wasn’t so sure I needed to call in and report this (and she was the one with the numbers.) I have fought my Mom all week about “something is very not right Mom” with her response being “just write it down and talk to the rhumie about it next month.” My Mom has not been supportive or helpful all week. If I hear one more smart alicky fifteen year old response, I will- insert verb here ____ them. I did a lot of crying on Thursday, I was quite done with it all.

Friday and I am still feeling like death on a platter with a side of death. I called into the UW and within a couple hours got a frantic call back. It went something like this “get your butt down to you GP right now, don’t wait just go in.” So Mom, begrudged, drove me down to the doctor’s office where the vampires feasted upon me. I felt pretty awful on Friday too. This whole week was just a hot mess.

Every single day this week my patience has been tried to the max. Like anxious kids waiting to go open presents on Christmas morning I have gotten the question “better? Better now? How about now? Better right now? Better yet?” Of course me being the scrooge I am, I have had to say “no, not yet, nope, yeah… nope” over and over again. Not because I want to but because it is the truth. Lupus isn’t a virus where I can be over it in twenty-four hours. I still feel like noxious waste today. When I do feel better, I will sing it over the hills and for all to hear.

My Mom I swore forgot everything about chronic illness this week. I think some denial has hit her hard in the shoulder. Oh goodie goodie…

Mentally all of the week’s events have been very taxing on me. Lots of misunderstandings and other such sources of frustration to deal with. Oh the temptation to just scream “but you really just don’t understand and you never will” swelled to such great levels (especially at my Mom.) But what a waste of spoons it would have been! So instead of exploding, when Mom was out of the house this week and I was awake I allowed myself to cry as much as I wanted to. Crying is such a fabulous release, followed of course by some really sloppy dog kisses because Maggie Maye felt she needed to lick the tears off my face. I am blessed to have such a supportive pooch around. Even though she farts and snores like there’s no tomorrow.

Lupus has had some fun on my time this week. I hope my lab results come back decent and next week will be better. This was not the way I wanted to ring in 2012 but Lupus didn’t ask for my opinion. It thinks it is just too cool for that…