Nasty Nasty Flare

Saturday, May 29th, I was feeling awesome!! I got my laundry done, got paperwork taken care of, did some shopping, did a 30 minute work out on the ellipitical machine, took a nap just as the doctor ordered...and felt on top of the world. In fact, so much so that Daniel said he was concerned.

Sure enough, he was right. I woke up Sunday May 30th at 2:30 in the morning gripped by a extremely nasty flare. Every fiber of my being....and I mean every cell, was in pain. I spent the night trying to gingerly change potions in bed to find comfort. I had a fever, and my every inch of my skin was super sensitive, and anything that touched me caused pain. I didn't sleep for more than 15 to 30 minutes at a time before the pain would wake me up again. I watched the clock all night...hopin D could get some sleep so he could be my support in the morning.

I spent all day Sunday in physical agony. Peeing hurt...wiping with toilet paper hurt...putting on deodrant... the contact with my underarms made me scream. My kidneys felt swollen and I had reoccurring stabs of pain through my lungs, both from the front and from the back. The glands in my throat/neck were swollen. I couldn't stand up straight. The pressure in my left temple was enough to make me fantasize about taking a drill to my head. I tried really hard not to cry when I had to move because I knew that would only make my head hurt worse. I took massive amounts of sleep aids, trying to bring about unconsciousness...and they barely worked. I couldn't believe my pain was keeping me awake.

Today, Monday, May 31st, has been better. My head hurts much less, and my skin isn't as sensitive, and my fever is lower. But I still have a non-stop, gripping, clenching pain in my major joints. My neck, shoulders, back and hips are the worst. I've been striving today for the right combination of resting still, and moving around enough to keep the joints from seizing up. I feel pissed off at my doctor....that I have nothing for pain except Tylenol! Which, I haven't even taken today because of the way my kidneys have been hurting. What's the freakin point?? The pain just doesn't let up!!! I've tried alot of my meditation exercises, and they do help for a little while, but it's like sleep and only lasts for a few minutes at a time.

I've been doing alot of little "pieces" for my current art project while I'm in bed...and Big D has been playing a great story on disk for me on the sterio... it helps to have distractions. One more note is that I haven't had any Olfactory Hallucinations leading up to or during this flare so far. Twilight just called and asked me, so I thought I'd better include that in my documentation. Oh and maybe I should say too, that my cognitive functions have been relatively high compared to some flares. My speach has remained pretty good, with good sentence structure and minimum stuttering or stammering.

More update soon

Little Things in Life

My time at home has been lovely. I've been working on art and knitting with yarn that I love. I love having live music in the house. My husband has a wonderful gift. When things are ugly...to the point of not wanting to dicuss them, D will suddenly pull out an instrument and play me a love song.

And then he cooks me really great food! Here is one of his homemade pizzas...he spoils me so!

So I'm just hanging out, enjoying those awesome little things in life that make me happy to be alive!!

My girls have arrived for a visit, so I'm sure I'll have great posts coming up soon!! YEA!

Lupus Note

Last night was another one of my crazy headaches....slightly different from the regular type of Lupus headache. I'm gonna start calling these my "Chilly Brain Headaches". They happen in the left rear quarter of my head, and they've been happening more and more often.

I have a bunch of different sensations that happen. It starts out as a cold tingle...really cold, almost numb tingling...I have moments where that whole part of my skull feels numb... sometimes it changes to really hot shooting sensations. And sometimes the sensations translate to me as pain, but not mostly. It's unpleasant and disconcerting, but not painful usually like a Lupus headache or a migraine.

Today I woke up at 8am and still had this "Chilly Brain" going on...it's mostly gone now by 3pm. But I've also had the Olfactory hallucinations again today...first an overwhelming cologne that made me gag...nasty nasty stuff......then it changed to burning rubber/electrical stuff.

Sweet Girl's Day

I walked, in the morning, in full sun gear...including umbrella...two miles down my road to where Twilight was waiting for me in her car! I enjoyed the morning walk very much! It's something I almost never do, I usually wait until shortly before sunset to do any hiking. We went to the state offices to pick up a bunch of icky paperwork to fill out, and then rewarded ourselves with rich mocha coffee drinks...new age music...pretty little waterfalls...and blossoming flowers. 'Wired' is my favorite coffee shop of all time, and any time I get to spend there is a real treat! We sat and knit and talked for hours! Twilight working on 'tinking' her lace tank top, and I'm working on miles and miles of I-cord for upcoming art piece.

Then we hit the thrift store! This is Twilight finding the perfect retro skirt to go with her killer green sneakers!

Here I am modeling an extreme piece of knitting. It's a freestyle knit tank dress...short in front and long in back. The price was $70....in the art section of the store. I didn't buy it, but we had fun trying them on and it totally inspired to make myself something crazy!

After playing dress up, we headed to the imfamous 'Free Box'. We scored two big bags of materials for our current and future artwork. It was a day for yellow!! I got a ton of yellow material to go into my "Big Hard Sun"......more about that in a future post!!

Quick Lupus Note

O-kay, for the sake of my Lupie brain I have to get better at making health notes to use for reference. I'm terrible at ever putting down much negative, but then can't remember when I need to.

Olfactory Hallucinations: Fire, and Black Pepper.
My first bad hallucination with the fire, I believe was in December 09...gotta check back blog posts...I've had one since then, about the same intensity. Maybe last month?

Then, Monday May 10th, and Tuesday May 11th, I experienced the overwhelming smell of black pepper...like someone had dumped out a container of it near me. I thought my husband spilled some, and went on a mad search even though he assured me no pepper existed. I made D smell me...and around me, and he says "no pepper"

That's it for now folks...

Visiting Friend

Our friend Nikki flew into Albuquerque to visit us for the weekend. She's an old school friend of Daniels who has spent the last few years overseas. She got back into the country last month and came for a visit while she still had a chance before she got wrapped up in American life again! Here we're at the Owl Cafe...and old Route 66 specialty!

Great buddies at the coffe shop!

At a festive restaurant on the Old Town Plaza....having a margarita!! Well, not me, but she got one!

Alot of fun funky sculptures....I love love love it!

Awesome Peruvian Flute band playing in the Old Town Plaza

It's so much fun playing the tourist guide!!

Here I am sharing my portable shade!!

Lace Dress

Ok, This is a call to action!! Yes, Twilight, I mean you!!! We've been talking about doing this knit along for well over a year now...so here it is May again...2010!! We've chosen our patterns, and we have the yarn!! Ready....Get set..... Go!!!