Lupus Shmupus

My new blog is Lupus Shmupus and addresses many other things including my illnesses.

Check it out, please. :)

Changing the title

x. Considering changing the title of my blog to something funnier.

x. Planning on integrating more about my life other than just illnesses, such as music, craft, internets, and the rest of it.

Archives Working

For whatever reason my site archives weren't working properly. Now they are. Go back and check that shiz.

Much love.

It's been awhile...

Sorry about that, if there is even anybody out there? Are you?

Hopefully I'll start posting more frequently, I just try to refrain from posts that simply say, "Boy I'm tired!"

My allergies have been pretty atrocious lately, and today especially. The price I pay for getting laundry done the past couple of days is feeling like I have a head cold and like I'm going to faint every time I move today. Unfortunately, I had to leave the house and face the "lights of major pain infliction" at the grocery store. Some days you just have to suck it up and do something you know is going to make you feel much worse.

I helped Sean pick out our groceries, and left him to wait in line alone. I needed to get outside in some fresh air. For some reason my hypersensitivity is related primarily to fluorescent lighting - being outside in the fresh air and natural sunlight is an extreme sense of relief after being under the synthetic lighting for 15+ minutes. While hanging around outside I noticed their handicapped accessible sign:



I know the photo is of a wheelchair user, but I'm pretty sure they mean handicapped accessible. And if it truly were handicap accessible they wouldn't use synthetic lighting that negatively effects people with a number of different illnesses.

Accounts of Fluorescent Sensitivity

I can't find a photosensitivity support group, but I did find this page full of comments from people who have problems with fluorescent lighting.

Fascinating read @ businessweek.com

UV, Lupus, Fluorescent Lights - Links

I've noticed that a lot of people are finding my blog by researching eye allergies related to their computer screens and/or fluorescent lights.

Here are some great links that are related to these topics and may help you on your quest for information:

This site has a short article about Compact Fluorescent Lights, followed by reader comments. Several are from people who are negatively effected by CFLs.

This one is a discussion about CFL's impact on those with Meniere's, migraines, Epilepsy and Lupus. Some share helpful alternatives, while others share stories of how they are effected.

If you really want to know how a Fluorescent light works, and about the Ultraviolet Radiation they emit, this site is very helpful.

The Worst News Article Ever

EDIT: I totally linked to the wrong article. Here is the "Worst Article": http://blogs.clevescene.com/cnotes/2008/01/todays_sign_that_were_all_fed_1.php

Those of you with Fibromyalgia will find this putrid, just as I did. I hate to give this writer any more hits to this article, but I feel like I need to post about it.

A writer for a free publication called The Cleveland Scene, writes an article in response to a New York Times article titled, "Drug Approved. Is Disease Real?"

However, in my opinion, it's pretty clear from his eloquent response that he didn't even read the rest of the article. He read the headline, and probably skimmed the first half.

It's frustrating that the article even addresses the fact that people with Fibromyalgia are stigmatized as chronic complainers, and then he just perpetuates this horrible myth. And the worst part? It's not even funny.

The first and only comment besides mine is pretty disgraceful, too. It implies that Fibromyalgia was made up just to sell Lyrica.

"14 Tips For Fighting Fibromyalgia"

Fibromyalgia-support.org is a website I have just discovered, but haven't really gotten to take much of a look at yet. I have found an awesome set of tips for fighting Fibromyalgia. Link.

A detailed account of using Marijuana for Anxiety disorders.

Elle magazine released a fantastic article about one womans account using medicinal marijuana to soothe negative side effects from other medications and her persistent anxiety symptoms. It's detailed, scientific and once you start reading it, it's hard to stop. Link.

Marijuana Smoking while Working

This article focuses on businesses that employ medical marijuana patients and how their performance is. If I could smoke several joints a day, I could probably get by on at least part time work. Link.

Eye Allergies & Lupus or Fibromyalgia

I'm not a doctor, but I want to share with you the tips that have helped me with the eye allergies I've had lately.

A very important rule to remember: DON'T RUB THEM, IT'S NOT WORTH IT.

Light Sensitivity: I've found that my eyes are extremely sensitive to sunlight, as well as the computer monitor and television screen. I don't know for sure that the sensitivity has to do with the UV rays emitted from all three items, but I do know that when I wore sunglasses while using the computer, it made it a lot more bearable. I also wore them around the house almost constantly while my allergies were in full swing.

Discomfort & Pain: Your eyes are probably pretty itchy, or feel like there is something stuck in them. It can get pretty sore. I've found a couple of ways to help. I used Tylenol Multi Symptom Allergy, which has an anti inflammatory as well as allergy medication for your sinuses and your eyes. If it persists, I would definitely see the doctor about a prescription strength medicine such as Allegra. For immediate pain soothing, I used a cool, wet washcloth on my eyes and forehead. I also used an ice pack in a 5-10 minute cyle, (on 5-10 minutes, off 5-10 minutes, etc.)

Infection: You will be able to tell when you have a full blown infection. If you are suffering from eye allergies, it's really easy to rub or scratch your eyes with your dirty hands, which could cause an infection. It does not feel good, and an eye exam while you have an infection is really unfun. Make sure you keep your hands clean, your ice pack clean, change your pillow case, and use only clean washcloths and towels.

Drainage: Your nose may drain all night onto your pillow. It's really disgusting, but hey it happens. You also may wake up with crusty, gooey eyes that you can barely open. For this, make sure you gently wash your eyes with a warm washcloth first thing in the morning. You should also keep your sinuses drained at all times. If you feel like you need to blow your nose, get that stuff out of there.

It's almost Fathers Day

It's almost Fathers Day and my mind is a mess. I've been sick with one thing or another for the past two months straight. My body is covered with sores since the sun started coming out again. I've been having bad dreams. My emotional state has been completely out of whack. I'm just not feeling super confident right now, about anything.

I'm a paranoid worrier at heart, and when I'm sick and unable to distract myself from my own overactive mind and sensitive sensations, the only thing I have left to do is worry. What is there really to worry about? If there isn't something, my brain will find it. Right now, it's money. But it's also more than that, because the entire basis for us not having any money is because I can't work.

Good Hygiene In Childhood Mean Bad Health In Adulthood?

This is a VERY interesting article and talks about Lupus some. Link.

Top Ten Incureable Diseases Currently

Lupus is listed as disease number 8, only behind Influenza, Creutzfeldt-Jakob Disease, Diabetes, HIV & AIDS, Asthma, cancer and the common cold. Link.

Eye Allergies.

As I write this I'm in various stages of extreme pain to my eyes by looking at the screen. I'm wearing sunglasses and alternating between typing a few lines and applying a cold compress to my eyes for some temporary relief.

I'm not positive but I think my original eye infection began about two months ago. Suddenly it felt like something was in my right eye. I, being a jackass, tried rubbing it out (Go ahead and laugh at "rubbing it out".) but of course that didn't help and only made it worse. Soon it spread to the other eye and I had to go see an eye doctor. My eyes were extremely sensitive to light, dimness, focusing on small details. It was difficult to get through the exam, because they were shining light directly into my very sore eyes. Plus having Fibromyalalgia just makes it ten times worse. I was given an antibiotic eye drop to apply to my eye four times a day. I saw the doctor for a follow up one week later, and I had shown progress but needed another week of drops. It didn't seem to get much better and it kept coming back and going away at random times. I soon began to believe that I wasn't suffering from an eye infection but extreme eye allergies.

I couldn't research it because every time I sat at the computer, my eyes teared up and started hurting really bad. Over the last few weeks the allergies have been very bad, to the point that I can't really do much reading, tv watching, go outside, use the computer, etc. It's difficult to watch my dog when she's in the backyard, because of my eyes. I worry every time I let her out that she may escape and I'll have to go outside and chase her down blindly. I finally got fed up last night and dealt with the pain that the computer screen causes and researched the allergies.

One of the first sites I went to suggested UV light to be an irritant. A lightbulb popped above my head, of course. Now I think I have pollen induced eye allergies which are extremely irritated by ultraviolet light. I'm going to schedule an appointment with my primary care physician tomorrow morning to confirm my suspicions. I would also like them to prescribe me some sort of allergy medication. I've tried several OTC eyedrops and pills over the past couple months and none have done much of anything.

Any thoughts, confirmations, or TIPS!!, please feel free to comment!!

Super High Me!

So, since the movie has been released (yesterday!) and even before, I'd been getting a lot of traffic from people searching for "Super High Me Screening" in Google. I've been really sick or else I would've done this awhile ago, but here's some information for you people!

Even if you're planning on going to one of the later personal screenings that are happening, if you are anywhere near one of the theaters playing it, PLEASE go out and show your support at the theater. As Doug said himself, "Don't be a cheap ass!"

It premiered yesterday, April 11, in LA (Regent Showcase), Seattle (Admiral Twin), Portland (Cinema 21) and San Francisco (The Roxie).

As for the personal screenings, you can still go to superhighmemovie.com to set up your own screening in your hometown - try to take advantage of that amazing opportunity. Really a great idea.

To see a full list of screenings - go here!! http://www.superhighmemovie.com/sample/screenings/

When I'm so sick

for about a week, and I can't do any kind of chores or any kind of project, I can't make myself food.. i end up getting really depressed and lonely. when i feel this terrible i don't like to be alone because i just start dwelling on insignificant things that make me feel really pathetic and worse.

flares, conjunctivitis related or otherwise.

so much stress lately, and i have developed the worst flare ive had in awhile. i have super inflamed sores on my body, a raging headache, a sore throat, extremely fatigued and my joints are REALLY BAD. i will post more when i am in a better state.

also - my computer is practically dead. a very kind and generous friend came by and worked with it a bit and got it to at least work the internet until we can afford to buy new parts.

i am just so dead right now. save a spoon for me.

xo

Vitamin D

Some posts on the LFA message board inspired me to post about Vitamin D deficiency. For my benefit and yours.

This article from WebMD says that Vitamin D deficiency may be linked to unexplained muscle and bone pain. [link]

So Stressed Out

My body is inflamed in almost every way possible, and I don't know if it is causing the amount of stress I'm feeling lately, or if it's the stress causing the inflammation.

About a month ago, out of nowhere, I got a really bad eye infection. I didn't realize it was an infection, until it had already spread to both eyes. They were very swollen and for a week and a half I was extremely light sensitive, I couldn't look at the TV or sit at a computer, I couldn't read or look at anything with the light on. I went to the eye doctor and it was an uncomfortable experience to say the least. I couldn't look into the machine for more than a second at a time without amazing pain and watering of my eyes. It was very painful and difficult to get through the appointment. He gave me drops to put in 4 times a day which were excruciating and caused more light sensitivity. I did this for two or three weeks and it went away for awhile. Over the past few days it has shown itself again in both eyes. I still have the drops and have started putting them in again, but my right eye became pretty swollen and hurt a lot again yesterday. Today the pain has subsided but the swelling is still there.

My face is completely broken out with a rash, my joints have been aching, and I've been unable to relax much. The last few days my tonsils have been swollen and sore in the morning, my nails are brittle and my clumsiness is outrageous.

I'm going to try to do some Yoga today while everyone is out of the house, and that will probably help some. There's a lot on my mind, lately. We're having money problems, and I'm having my own issues to deal with. It used to bother me a lot, and it has subsided to only really getting to me every six months or so. It's so hard to not be able to provide for myself in any way shape or form. Most importantly, I can't help much with bills and household expenses and food...

but it really starts to take a toll on your self esteem when you can't provide for yourself to keep up your appearance at all. I haven't been able to buy new jeans in years, I'd like to buy myself some minor items for my hair since it has grown so long. Because of my eye infection I have to buy new eye makeup, I'm running out of sunscreen (most importantly of all.). It's hard when you're so exhausted (and broke) that you can't even develop a hobby or skill.

I have great girlfriends that I want to be able to spend time with. We've been planning on going out together this weekend two separate times, and I should be used to it by now, but I can't go again. I have to think about my health and stay indoors this weekend and try to get myself feeling better. It's really difficult.

end rant and self pity.