Sitter by Desolate Streams
07 January 2012 @ 12:35 pm
One of my the narcissus I dug up from an abandoned lot last spring (on a moonlit night with a blind companion, no less- that has to make them magical, right?) is already in bloom, confused by the warm winter we're having. I've been snipping off its stems to bring into my bedroom for their wonderful fragrance. Many of the other bulbs are sending up flower shoots, as well, but none are as over eager as that one particular narcissus.

My flower bed in front of the large, front windows is overflowing with adorable, purple violas, which Miranda-Panda and I planted all along the border in early autumn, and the Oriental poppies I planted are leafy and green and should begin flowering soon; I wish I had planted them earlier, but it's been so warm that I doubt they would have germinated earlier in the season.

Panda and I have been harvesting turnip and radishes regularly from the big front bed, but unfortunately she doesn't care for either. Once we've collected all of those I think we'll plant some carrots together, so she can have the experience of harvesting something from the garden that she actually enjoys eating. The chard looks ready for me to begin cutting as I like, to cook or add to my salads, and the black hollyhocks (which I can't wait to see in bloom!), borage, nasturtiums, lupine, and strawberries are all doing well. The purple coneflower (echinacea) is so full of blooms that it looks like a cartoon flower; every morning when I open the curtains in Panda's room, the first thing I see when I look out her window is the gorgeous daisy-like flowers of the echinacea, with bees crawling all over their pink popcorn ball centers. Today I'm going to pull all the many, tiny weeds in the shadier part of that flower bed near the front porch, then plant the foxglove seeds I've been storing in the refrigerator for the last few weeks.

I have many wonderful seeds that still need to be planted, including black bachelor buttons, pink milkweed, great mullein, coneflowers in white and yellow, Miss Wilmott's Ghost eryngium, black and showy Black-eyed Susans, creeping Thyme, black nasturtium, and a variety of Love-in-a-Mist with wonderful magenta blossoms.
Current Location: Music
Current Mood: content
Sitter by Desolate Streams
24 September 2011 @ 06:21 pm
Panda still has a nasty cough, which is because her flu developed into "mild" pneumonia in her left lung (I can't consider any pneumonia mild when it's effecting my own kid!), but she's already improved on Day Two of antibiotic treatment.

I've got a milder version of whatever she had, which is now just a painful, sore throat that keeps sticking around.

We're still going ahead with Panda's birthday party tomorrow, although I think almost all the other kids we invited are going to miss it, because now they have the awful flu that's been going around.

Otherwise I can't complain too much. Other than my hearing getting noticeably worse and my tinnitus getting noticeably louder, my lupus has been behaving itself; I have pain and fatigue, of course, but it was a level of pain and fatigue with which I could cope. Last week was depressingly rough with joint pain, muscle tenderness, and crushing fatigue, so I'm feeling especially chipper and grateful this week. Due to Panda's illness and my subsequent illness, I'm behind in all but one of my classes, so every now and then I send a silent prayer to Ganesh, hoping that he'll keep the lupus obstacle out of my way for another week or two.

Right now I'm waiting for my lentil soup to rich a nice, lazy simmer so I can begin dropping in the dumplings. This will be my first attempt at whole wheat flour dumplings, so dinner is also a bit of an experiment; my hypothesis is: If I make dumplings with whole wheat flour, then they will be delicious.
Current Location: Music
Current Mood: chipper
Sitter by Desolate Streams
08 September 2011 @ 02:27 pm
I went to my rheumatology appointment yesterday afternoon and came away from it with mixed feelings, as I usually do. It was nice to see the same doctor who first diagnosed me; she was as fabulous as ever, all four-foot-nine of her, in her giant platform sandals with the gold lame´ straps.

My blood work, as ever, was deceptively good; there is no detectable disease activity according to my blood work, but I'm still symptomatic, so they decided to add another drug that should help with my fibromyalgia pain, although honestly the lupus arthritis joint pain is a bigger issue. From what I've read, many people with lupus remain symptomatic despite blood work that would suggest otherwise and I think that may be the case with me; the drugs have, for the most part, taken care of the big things (kidney problems, even worse fatigue, joint swelling), but I still feel my lupus clinging onto me like wet clothes every day.

I am to continue cutting back on my prednisone, which is a very good thing. So from 2.5mg I'm to go down to 2mg, then in eight weeks 1mg, and after that possibly 1mg every other day. The immediate effect this has had on me is overwhelming fatigue, but getting off the prednisone will be good for me in the long run and I've already been on it a looooong time, even for a lupus patient. Hopefully the drug-induced diabetes will diminish with good diet and exercise once I'm entirely done with prednisone, although it's possible that it may be permanent.
Current Location: Music
Current Mood: tired
Sitter by Desolate Streams
28 August 2011 @ 08:21 am
I feel like I'm just goofing off in my Cartooning and Comic Book Art class, because what I do in there is exactly the sort of thing I do (or used to do) at home for fun: sketch geek goddess heroes and villains on what would be called "model sheets" in the industry.

My text books for the class are equally fun: How to Draw Comics the Marvel Way and How to Draw and Sell Comics.

During the last week I've noticed that my hair loss has increased dramatically, which has to be due to a combination of lupus and stress. Apparently with my particular flavor of lupus I get the choice of having either a full head of hair and moon face or to be thin and have thinning hair.

I supposedly now have health insurance through Carl's new job, but I'm wary of that, because no questions were asked about my health and supposedly I'm fully covered. It just seems to good to be true. In any case, I plan to call every rheumatologist on the list to find the one that can see me sooner rather than later. I need a neurologist, as well, because I'm experiencing much more dizziness and seeing spots more frequently than I did last semester. I'm looking forward to getting out of the LSU free care program, because the only way I can get immediate treatment when I have a flare of lupus symptoms is to go to the ER and be admitted to the hospital, rather than just getting a cortisone shot and having my meds adjusted on an outpatient basis. It's nice to have more options- it's nice to even have the hope of having more options!
Current Location: Music
Current Mood: calm
Sitter by Desolate Streams
21 August 2011 @ 10:29 am
I woke up at 6:30 Saturday morning with my right arm asleep. That's pretty common for me, because I sleep like the dead these days, so I just relaxed in bed while waiting for the pins and needles sensation to leave me, but while I was lying there I realized that I couldn't hear a damn thing from my left ear and it felt like I had water trapped in it- just a slight sensation of fullness. When Miranda woke up an hour later, I couldn't understand a word she was saying, because my hearing in my left ear was nearly completely gone, but as the day wore on it returned to almost normal. Today the difference in hearing between my two ears is very subtle, but I still have a sensation of fullness and when it's quiet I can hear a soft hissing sound, which I suppose is a touch of tinnitus.

I spent six hours at the LSU urgent care clinic yesterday (which was unusually long, because there is only one physician on duty over the weekend) mostly just waiting. The doctor checked both my ears and explained that the build up of wax in each was pretty minimal, so he couldn't explain the difference in hearing, but he scraped the wax out of my left ear and then flushed it out with several syringes of sterile water. In fact, he flushed my left ear so deeply and with enough pressure to affect my inner ear, which caused me to experience some pretty crazy vertigo for about ten minutes; I now have deep sympathy for people who have to deal with vertigo on a regular basis!

So, I came away from my six hour visit to the urgent care clinic without a diagnosis, but I did do some research online and learned that Sudden Hearing Loss is a real condition that can occur alone or in conjunction with autoimmune diseases, or can be caused by ototoxic medications, like Plaquenil; apparently it's fairly rare for Plaquenil (hydroxychloroquine) to cause hearing loss and/or tinnitus, but it's definitely possible.

Last night and this morning I skipped my Plaquenil, but I took a double dose of steroids this morning (just two 2.5 mg pills), because between my episode of partial hearing loss and my terrible malar rash, I feel like my lupus may be flaring. Yesterday my malar rash had bloomed all the way across my cheeks, up to my temples, across my forehead, and even on my chest, despite how carefully I protect myself from the sun; the only other time I've had such a terrible malar rash was when I was first diagnosed, back in November 2009, and had suffered two TIAs.

The TIA for which I spent a weekend in the hospital in July is just further evidence that my lupus isn't under control anymore, so I'm going to call my nurse practitioner at the New Orleans Musician's Clinic Monday morning before my first class, as well as the appointment line for the LSU rheumatology clinic, although it's doubtful I'll be able to get an appointment quickly enough with my doctors at LSU.

I honestly felt like I was doing all right with the lower dosage of steroids and the added responsibility I've had to shoulder since Carl left for his job training, but apparently it's taken more of a toll on me than I was willing to admit. I realized I'd felt more worn down than usual, but I was just blaming the heat for that; of course, the heat certainly doesn't help and even going to the grocery store can sap my energy and cause me to develop a fever that persists for a day or two, so whenever possible I run errands early in the morning and schedule nothing else for the rest of the day. It occurs to me that until the temperature starts to drop or my lupus is well-controlled again, I may have to find someone to run errands for me. I enjoy my independence, so it's frustrating, to say the least.

The good news about my health is that my left hip is basically okay. The MRI showed no signs of damage, so the problem is orthopedic or possibly due to the non-degenerative form of arthritis I have in relation to my lupus. So, whatever it is causes pain, but is not obviously damaging.

Of course, I'm concerned about my class schedule, because it's fairly instense, but I think I can manage it if I can get the right drug cocktail mixed up to get things back under control. Even when I was puking every morning, right before class, I was still able to feel pretty well and attend classes nearly every day; I worried that I would secretly be known as "the girl who always smells like vomit," but no one seemed to notice. I hope they really didn't!

On Mondays and Wednesdays I'll be at school from nine to five, taking Computer Graphics I, Cartooning and Comic Book Art, and Contemporary Art. Tuesdays and Thursdays will be easier, because I'm just taking Water Media II and Algebra II, so I'll only be at school from nine to two. As always, I'm a bit apprehensive about my math class, but less so than usual; at this point in my life my lupus is much more of a concern than my studies.
Current Location: Music
Current Mood: consternated
Current Music: She-ra
Sitter by Desolate Streams
13 April 2011 @ 08:27 pm
The good news is that I'm starting to taper off my prednisone dosage tomorrow, going down from fifteen milligrams to ten, then eventually to five, and finally to five every other day; the process will take months, but I'm excited that I may be able to manage my SLE with hydroxychloroquine alone. Since I'm going to be going through a significant change in the next few months I've decided to drop the summer classes I was planning to take; I'm afraid that the combination of stress and major medication adjustment could cause a lupus flare, so I'm going to play it safe and take it easy this summer. Hopefully I can lose some of my moon face and regain some upper arm strength this summer!

The bad news is that my left hip may have already been permanently damaged by long term steroid use. I don't yet know how badly it may have been damaged, if the damage is permanent or reversible, or if ceasing steroids over the next few months will prevent further damage. I'll be having an MRI on my hip, an x-ray on my left knee, and a lot of blood work before seeing my rheumatologists again in six weeks to review everything and formulate some sort of a plan. In the worst case scenario I will eventually need a hip replacement, but I'm not fretting over it.
Current Location: Music
Current Mood: content
Sitter by Desolate Streams
22 March 2011 @ 08:24 pm
The muscles by my rib cage still ache and my throat is sore after a steady ten hours of vomiting everything, including tiny sips of water and ice chips. My mom's friend Joe, who is a registered nurse, was thankfully able to give me some practical advice so I was able to avoid going to the hospital for IV fluids and also feel a little bit better. I had managed to become so dehydrated that my eyes were no longer watering when I would vomit and I had stopped urinating. TMI, I'm sure. Thank goodness for Immodium, Gas X, and ginger ale.

These days, whenever I get sick I worry about developing a lupus flare, especially when I'm unable to take my medication. I'm fortunate enough to be one of the people with a very manageable case of lupus, so it's not as big a concern for me as for a lot of others, but it's always in the back of my mind.

I'm much better today and I think I'll be fine to go back to school tomorrow. When it was first obvious that I'd caught a stomach bug I was very worried about missing so much class that I wouldn't be able to catch up, but I think I'll be okay.

I'm going to be working on scratchboard this week for Illustration, which I think I'll enjoy. I did a small scratchboard piece on Saturday night to get a little practice with the medium, which can be seen here.
Current Location: Music
Current Mood: exhausted
Sitter by Desolate Streams
04 March 2011 @ 07:14 pm
Today was a Bad Day. Capital b and all that.

It started last night with all the joints in my left leg becoming extremely painful and stiff, so much so that I couldn't put any weight on it. When I awoke this morning my knee and ankle were still swollen and aching, my muscles ached, and I was running a moderate fever. I feel much better now, although still ragged out. Mostly I just have felt terrible about having to send Miranda to my mom's; I know I needed the rest and I couldn't have taken a muscle relaxer with her here, but I always feel awful when I send her away for any reason. I had to take a muscle relaxer or I couldn't have slept, because the pile driver on the opposite corner was actually shaking the bed.

I had a good cry over it this morning, then ate some breakfast and finally touched up my contribution for Illustration Friday.

Sometimes I just have to have a little pity party before I can move on and focus on other things; my really bad days just make me feel like I've lost so much, otherwise I feel like I carry on pretty much normally.

Now I'm just staying off my feet and waiting for Carl to get home with Miranda Panda, so I can get in some snuggle time before bed time. Tomorrow I'm planning to take her to a friend's child's first birthday party and I want to feel better to stay a while, so I'm just planning to relax tonight and maybe sketch or paint a little for my various homework assignments.

I'm also contemplating the new Illustration Friday theme, "Warning." I think I may do something with mushrooms and maybe in gouache.
Current Location: Music
Current Mood: tired
Current Music: just the pleasant, hollow clonking of the bamboo windchime
Sitter by Desolate Streams
04 March 2011 @ 05:43 pm
My contribution for Illustration Friday can be viewed here:
Current Location: Music
Current Mood: sick and tired