flu blues

So I had a nasty case of the stomach flu this week....it began Sunday night, after we had gone out for a really nice (and darned expensive!) dinner for Father's Day, at one of our favorite places, Go Fish. I had eaten much more than I should have, and quite a lot of dairy, which despite the TWO Lactaids I took, had started to make my tummy hurt. By the time we got home, I was really off. I was feeling nauseous on top of actual stomach pain. Then, around 9ish, the vom began. And it was so raucous that I actually pulled abdominal muscles from puking too hard. I hate that. I was up all night- at one point I just wanted to fall asleep hanging over the toilet bowl because I was so exhausted. Instead, I kept crawling back up and down the hall from my room to the bathroom, and trying to climb back into bed. I didn't go to work Monday, had a 103 fever, and just felt horrifically nauseous all day. And a headache. I was not able to eat solid food, but luckily could keep all my meds down, so that was a bonus. It continued much in the same way until Wednesday, when only a slight fever, and not too much nausea, so that by the end of THAT day I had some soup with noodles and carrots and celery, and seemed to be better off. Only got to work Thursday and Friday, which is not good. That means a much crappier paycheck....and how the heezy am I supposed to pay all my insane bills if I don't have enough money???? I dunno. The only good news was a slight weight reduction since I didn't eat anything for 3 days. whoopee. And the fact that my appetite is a bit reduced....can't force that much down. Good news there. But in all, I must say, the adult stomach flu sucks a lot worse than when you're a kid, and it is all ginger-ale and toast and watching disney movies curled up on the couch. This was heinous. My chest cavity still hurts a bit, leading me to believe I may have bruised my ribs puking. Stupid flu. 

and when she was bad, she was horrid

That is a line from the childhood rhyme, 'There was a little girl, who had a little curl, right in the middle of her forehead. When she was good, she was very very good, and when she was bad, she was horrid' . This morning, I was horrid. Not through any fault of my own mind you, but I must have had some severely low blood sugar, because I was shouting incoherently at my father and sister, and couldn't even function enough to test my blood sugar. My father insisted upon me taking some glucose and having some oj, and then when I was able to test after 3 glucose tabs and oj, it was only 52. So I can't imagine how low it was BEFORE that. Evidently I kept saying that I was fine and didn't need anything, and wasn't making any sense whatsoever. My dad was freaking out. See, the trouble was, I slept in. I slept in till almost 8am. On weekdays, I usually get up at 4:30, take out the dog, then we come in and I pack lunch and make breakfast and eat it. So by 5 I've eaten already. Granted, if I eat and it is a carb-filled breakfast, I bolus, but the eating forces me to check my sugar and see what it is before proceeding to bolus for whatever food. Sleeping in (despite having gotten up at 4:30 to take my meds and fall back asleep) means I didn't check my sugar, nor did I eat anything, so if it was low, how would I know? I recall waking up and feeling weird, but thinking it was because I was so OVER rested, and it felt mildly euphoric, so that is what I decided. I came down, brought viv down, and then "fell asleep" again on the couch. We think that is when I passed out. Then I reawakened when dad came down....and I can't really remember anything else. I know there was a lot of shouting on my part, and I couldn't test my own blood sugar, and eventually dad woke my sister up to come help (bad idea, she hates blood and needles and I almost made HER pass out because of it) and she told me later that I was being insane. Great. The worst part was, yes I felt weird, but I wasn't sweating, and not shaking until way into it, and I didn't KNOW that I was being incoherent. In my head, I was being fine. I didn't even know I was shouting. Given that I was unable to test, if my dad hadn't kept trying and pestering me until I could test, what would have happened? What if my dad, who isn't generally the "help Meg in medical situations" person in the family (that would be mom who is away now) hadn't realized that I had low blood sugar? I mean, I guess it was pretty obvious that my crazed shouting and irrational behavior wasn't the norm, but still,what if he didn't know, and then I couldn't test, and it just kept getting lower? Or what if I was alone? It is times like these that I really resent my insurance company, because they won't let me have the Continuous Glucose Monitoring System. A CGMS would be so helpful in times like this, because it would have warned me when I started going low, so that before I got really really scary low, as I did, I would have had time and realized it. And it could test for me since I couldn't test myself. Granted, I know there is a time-delay on it of like 10-20 minutes or something, but still. This was frightening. I'm going to call my endocrinologist on Monday and tell him what happened. It is sad that I have to leave him (or he has to leave me rather, since he is moving to Colorado) and now have to go to the Joslin Clinic here, but it is closer anyway. I just hope he'll do me a last favor and write another letter to the insurance company, or at least to the new doctors, and tell them that he recommends I get the CGMS, to prevent things like this happening. Part of the issue is my other diseases. Like, my steroids go up and down, and my basal rates have to change when the steroids change, and sometimes it is hard to keep up with all the shifting. Having one more tool in my arsenal of keeping healthy blood sugar levels would be nice. Sigh. I guess for now I'll just have to be uber careful, and when I wake up to take my meds and then fall back asleep on weekends, I'll have to test and make sure I'm ok. So that I can be very very good again. 

best foot forward

Went to a podiatrist today, about the pain in my heels, and just generally, since diabetic folk like myself need to be more careful. As far as the diabetes goes, you would never know I had the disease based on my feet. Which is great news. Despite the Raynaud's occurrences that I notice in my toes (mostly discoloration not so much the numbness) my sensation is great. So then we tried to figure out what was causing the "wake-me-up-in-the-middle-of-the-night" heel pain. When he pressed my heels, it was fine. No pain to speak of. Then he pressed right where the arch meets the heel. HOLY GOD it was death on a stick. He also pressed along the sides of my feet, where the ankle meets, and boy did that suck. (didn't help that today my feet decided to swell up again). What seems to be happening is that the nerves that come down from the sides of the leg to attach to the foot around the heel periphery are being irritated. From two things, one is that I tend to bear weight weirdly, so my ankles roll in, thus stretching that inner nerve part, and also making my foot stretch so it can be more flexible and stable on the ground. The other is the deep tissue swelling irritating the nerves. I also have what I would call Pre- Plantar Fascilitis, which would cause more arch pain. So, in order to help these issues, he wants me to get compression stockings (they are evil old lady knee socks that basically just make sure you get blood flow back UP the legs through the veins, preventing swelling) and also took some plaster casts of my feet to make me insoles for arch support. Basically, though I still have an arch, my fleet are slowly flattening out. No good. So to prevent it, insoles. The good news is that I've used my entire deductible for insurance, so they'll fully cover the $555 insoles. woot. 

In other news, tapering down the steroids. Not as crazy of an appetite. But still not great. No weight loss yet. Face still huge. Going to try to get to the gym at least once this week. ho hum. but I'm trying to be patient, even though I absolutely have no patience whatsoever.

At least the foot prognosis is good. 

piglet

No, I am not referring to that sweet, earnest character of AA Milne's imagination. I'm referring to me. As in lately I feel like a piglet. Or rather, a huge hog. The giant kind, like George Clooney keeps as a pet. Gross. I've been on high dose steroids for a loooong time now, two months or more, and have only just started tapering down. What that means is the giant moon face, huuuuuuuge belly, and an appetite to match the entire continent of Asia's hunger. Combine that with the fact that I can now eat wheat and gluten, and my long-standing love of all things sweet and baked, and you've got one giant girl. Who has major self esteem issues anyway, only worsened by her unattractive state. I can't control my cravings at all, despite drinking white tea in large quantities, chewing gum to distract myself, and generally trying to ignore the desire to eat eat eat. 

This morning, attempting to get dressed for work, I had a meltdown. Nothing fits. I can't close pants or skirts, and the dresses are really tight. Once I got a hold of myself, and threw together a semi-acceptable outfit, I decided things needed to change. So I didn't have sweets today. I had fruit salad for a snack, and peanuts, and a sandwich at lunch. But I feel incredibly deprived. I went to the gym, and could only bike for 25 minutes (luckily I set the power level to 5- the most difficult- so I still did 4.5 miles and burned over 100 calories) before my breathing and pain got to be too much. I couldn't even do abdominal workouts on the machines it was so bad. And it used to be, before this awful flare that sent me up to high steroids, I wouldn't be hungry after the gym. But right now I am. I'm starving it seems. I just want to eat. And I don't want fruit or veggies or meat. I want cookies and cakes and sweet things. 

Sometimes I really hate being diseased. Like, for serious. UGH

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.