marshmallow feet

Yep. Thems is my feets. Kind of hard to see how bad they are (though perhaps that is maybe a sign that today they are somewhat better??) but you can definitely tell around the ankles. My poor tattoo looks ridiculous. They have been like this since last Tuesday. I stopped the indomethacin last Friday. And yet, there you have them. Marshmallow grossness.  But doesn't my big dog look nice? So yes. Here is what keeps happening. I keep trying to live life like a normal person (ie going to Free Cone Day, going to work) and I am continuously thwarted. On Free Cone Day, SisterK, BroC and his BroW and I all trekked to the casino to acquire some sweet ice cream goodness. On the way from the parking lot through the casino to the actual scoop shop, we had to stop and rest for me to try and breathe like 3 times. Ok. Fine. We get there, wait in the line, and get our ice cream. Standing still wasn't bad. We walk to a bench and enjoy the deliciousness. Then We get up to leave and I decide to just try and get a momentum going so that we don't have to stop as much. This plan backfires hugely. Not only am I gasping for air, but for some reason that day my hips and legs had been randomly going a little weak, like you know if you have a "trick knee" it just kind of goes out? Well like that. So then, I'm in pain trying to breathe and keep walking, and all of a sudden, the hips go. I basically collapse onto my sister, and am just spasming, trying to get air in, much like a fish out of water, except now I start to lose it. I'm in the middle of the casino walkway, clutching my sister for dear life, and people are staring and it is horribly embarrassing and I have SisterK get me to the side of the aisle at least, and C gets a chair from one of the table dealers, and we try to find someone to get me a wheelchair. Some nice folks asked if I needed help or an EMT. Then the rest of the crowd (mostly little old Asian folks losing all of their money in the casino) just keep staring. Like serious rubbernecking. One woman came back for a closer look. I was so upset. I wanted to shout "hey don't you have some money to be gambling away to the indians???" but I can barely breathe, not to mention, as I said I am becoming more hysterical, crying (which makes breathing worse) and just so embarrassed. So C and W and then this elderly Casino worker get some wheelchairs (we got two. I took one and then I believe W was pushing SisterK around racing style) and they wheel me to the garage and then the car. Then C K and I got chinese to bring home to mom. Upon arriving home we told mom the story, and I tried again not to get all upset, and then I took two oxycodone (both for the insane amount of pain as well as my nerves. I just needed to be knocked out) and we watched American Idol. I didn't go to work Wednesday, because of the breathing pain and my legs were still pretty weak. So then, after a day of resting, I decide, Thursday-work. yes. If I moved incredibly slowly, thus not raising my heart rate which then keeps the breathing at more of a resting rate, then I didn't breathe hard and then it didn't hurt, which left me able to function. Sort of. The feet I tried to keep elevating, but they were being awfully persnickity. None the less, I thought I could do ok. I was wrong. By around 2:30 I was having trouble breathing just sitting at my desk. And I had to get up to use the ladies room, which is at the other end of the building. I worked up some gumption, and set out. Moving slowly. Almost backwards-like-slowly. SJS said she would give me 30 minutes, and if I wasn't back, she would come find me. I went. I made it there. Granted, I had to move slowly and opening the doors was hard. But I did it. I got back to my desk, again going slow, but then had a bad spasm, and then couldn't quite catch my breath. While I had gotten to the bathroom, the walk had nearly killed me, so I decided to ask my dad what time he was leaving so he could either bring my car from the lot to the door of the building, or grab his car, pick me up, and bring me to mine, when it was time to leave. But then SJS asked if I was ok. Because I was still not able, after having been at my desk again for a few minutes, to catch my breath. And her asking, while not the wrong thing to do, just set me off. I got upset. Embarrassed. Ashamed. Frustrated. She went and got my dad from his office, and he decided I was in no condition to drive (by this time I was spasming with every breath, again because when I get crying and upset, everything freaks out) so he called SisterK and BroC to come pick me up and get my car and bring me home. He helped me walk out to meet them. I tried not to cry so much while leaving, so that not as many people would see what a freak-show mess I was. We got home, I tried to elevate my feet and put cold on them (part of the problem in particular was my feet were extremely painful. more so than most days. even though I tried to wear non-evil shoes), but of course it is hard to get them higher than my heart because then I can't breathe. BroC helped me put the cold stuff on my feet, tying the cold packs on with scarves, and he did this even though my feet were huge and stinky. SisterK has obviously found a wonderful person. So yes, today I didn't even bother going in. I am starting to feel like I'm just kidding myself thinking that I can live life like I used to. I just don't think it seems right. I think today has been the most lupus-patient-like day I have had. I have barely moved. I did shower, and made breakfast, and planned dinner, but I am trying to keep my feet up, and I massaged them with lotion (the swelling has caused the skin to dry out plus massage can help the fluid move out of the tissue) but I am taking it easy. No baking this time. More resting. But I feel useless. I feel like this is such a dang waste of time. I also requested an appointment at the Mayo Clinic. so that someone can figure out exactly what is going on in this ratty body, and how to fix it. At least so I am stable again. I can't for the life of me believe that this is just going to be my life. I know I read other bloggers' stories, and wonder how they can live the way they do, and I always figure they must be so so so much worse than I am. But what if they aren't? What if I've just never resigned myself to the fact that I'm going to be like a useless hermit cripple? yea no. I can't deal with that. If that was my life prognosis, I seriously would rather die. It is bad enough how embarrassing I am to others and what a dang burden I am, but it isn't a way to live. Walking slower than a turtle going backwards? How can I walk in my sisters' weddings? UGH. I don't know. It is just too much right now. My mental state is getting worse. Boo. Boo. Boo.

losing it

I am really beginning to lose the grip on my sanity. Last week, starting Monday, my ability to breathe was declining rapidly. By Wednesday, no improvement and more pain. So I went to the ER per the rheums instructuions. See last blog entry. This week, in order to keep from having no painkillers, I had to follow up with my PCP and check in with the rheum. So Monday did all that. The PCP extended my use of just plain oxycodone, and the rheum called in an Rx for Idomethacin to see how it helps on the inflammation. By Monday night, my left foot was swollen. Hmm. So since I was couch sleeping anyways, I tried to elevate the foot a bit too. By next morn, both feet kinda puffy. I wore comfy shoes to work with my jeans, and figured it would be ok.Plus I kept it elevated at work and even at therapy. By the time I got home at like 5:45, both feet and ankles were huge, and oddly, my knees felt like my pants were tight on them. So I look, and from the knees down are huge puffy messes. I tried pressing, and the skin didn't stay pitted, so, once again, on the couch for breathing anyways, so up with the feet as well. By Weds, called the rheum, she tells me to keep an eye on my blood pressure, and I need to come in for 10:30 am friday so she can see my legs. In the meantime, just wait. So here I wait with giant puffy sort of numb but also in pain legs and feet, still trying to breathe, and because pain trumps sleep, having gotten very little rest in two weeks, my mental state is droooooping.I try not to cry at the drop of the hat and not get messy.I feel better now that I have vented.

Doogie Howser?!

So since I've been off of my anti-inflammatory meds (colchicine and no otc painkillers), after a while I finally started to crash. Lungs mostly. The pain in my chest just got overwhelming. By Monday I was freaking out, because I always get a bit worked up thinking that I can't breathe (even though my actual pulmonary function is fine) so I called the Rheum dr, who just said, "You should go to the ER and get checked for clots." Well boo to that. She didn't even suggest upping the prednisone a bit more and seeing if it helped. Well I just didn't like that. I did not go Monday. I did not go Tuesday, though I skipped work. Then Wednesday, I went in to work, and then left early and came home to discuss the pros and cons of the ER. One, I wasn't getting better. At all. Two, they could do all sorts of tests and checkups. Three, maybe they would know what to do about the pain without destroying my (supposedly) precarious liver situation. The cons are the cost, the wait, the fact that ERs are full of whackos. So I went in. I got in at like 4ish and of course didn't leave till midnight. They checked everything out, and basically, it is the lupus crap. Of course. But my ER Doctor (who was a youngin....hence the DH reference) checked out my liver enzymes and told me that even with the very slight elevation that I had, I could probably still be on OTC meds. He went to the University of Pittsburgh, which is the top liver transplant center in the US, and they had patients with severe cirrhosis and other issues that could still take Tylenol. But, in the interest of not angering my rheum, he wrote me a script for just oxycodone, without the tylenol part (when it is both it is Percoset). While I was still in the ER he gave me some dilauden (and boy was THAT fun wooooo) and then just a couple of painkillers for the night before I got the prescription. So then got home around 12:30, so no work on Thursday, but the drugs helped a lot. I have to find a pain specialist and do my best to get the pain levels under control. So we'll see how things progress over the next week.

Other highlights of the ER: 

-my blood sugar being stuck in the 40's and then everyone tried to force feed me a horrible sandwich.

-some young (teen?) girl screaming "don't touch me! I'm not 18! Where is my mother!? I'm going through withdrawal don't TOUCH me!!!" and then proceeding to punch a nurse (we think)

-some guy my dad went to high school with who is ALWAYS there because he is an IV tech, came in a chatted with us a lot. Weird.