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Unfortunately it's not easy to save the image and repost them on a site. But if you go to CafePress.com and search for "Lupus and Fibromyalgia" you'll find an enormous amount of products, with a variety of sayings and logos related to our illnesses.
Check it out, I had some fun looking through all the stuff.
I become extremely uncomfortable when I have to sit or lay on a hard surface. The pressure of the hard surface against my body is too painful to handle. When watching a movie or going to a restaurant or to a bar, I have to carry around a pillow so my little butt won't hurt too much. I know I can't be the only person who has Fibromyalgia that has this problem. I've been trying to come up with a solution. My boyfriend has come up with a pretty awesome purse / pillow combo design, and I recently stumbled across a website I thought might help. I can't afford one right now, so if anyone else tries it - please let me know how it works!
I promise they didn't pay me to post this. It's a pantie / padding combo, designed specifically for making a flat butt look a little rounder. Thus making the name, "Bubbles Bodywear" appropriate. It's like killing two birds with one stone for me, since it will make me look like I have an actual ass!
people on message boards who are out of line? Probably on your blog. I'll try to make it ambiguous, but I'd like to address some of the things this guy brought up.
There is an experimental therapy for Lupus patients using UVA1 rays, and for a lot of them it improves brain function rather than hurting them physically (like UVA and UVB rays typically do.) I've read about it, and I do believe it can help people with Lupus. But I don't believe it is going to help me, because I have fibromyalgia in addition to Lupus, causing extreme sensitivity to everything from sunlight, to fluorescent lights, to medications, so much that it makes me uncomfortable.
The person who was pushing this down my throat didn't bother to listen to what I had to say, instead they got defensive over me expressing my opinion in a mature manner. It's the same way I feel about overzealous religious people. I don't push my beliefs down your throat, you pay me the same respect. Just because I have an open minded view of questioning something instead of immediately believing every word that is thrown at me, doesn't mean I'm stupid. It means I'm going to investigate it a little further.
The fact that you are self righteous, mean and obnoxious about it really doesn't encourage me to read about this therapy, which I thought was your intention. You wanted to help people, right? So do it in the most comforting and friendly way possible, instead of calling them idiots.
by Miss at 3/26/2008 05:28:00 PM
It says, "My disabling chronic condition is more real than your imaginary medical expertise." I laughed aloud at that one.
Finally! This is the third time in the last two months I've heard a news story regarding the dangers and health risks of compact fluorescent light bulbs. It's a little disappointing that they don't talk about the health risks of actually being exposed to ultraviolet rays for long periods of time. I guess I'll have to seriously discuss it here in the future. Here are the highlights from the article.
- Compact Fluorescent Lights (CFL) are coiled bulbs that generate light by heating gases in a glass tube. Considered to use 50% or more less energy and last longer than incandescent traditional incandescent bulbs.
- Still many concerns regarding the amount of mercury contained in all CFLs.
- Mercury is a neurotoxin which can cause kidney and brain damage. It's only 5 mg, an amount tiny enough to barely cover the tip of a pen. However, it is still enough to possibly contaminate 6,000 gallons of water beyond drinking safety. Even low mercury CFLs can potentially contaminate more than 1,000 gallons of water beyond safe levels.
- Eventually, any bulbs (even CFLs) break or burn out, and most consumers simply throw them out in the trash because they don't know what else to do about it. A consumer called several government agencies regarding disposing of a broken CFL, and they didn't know what to tell her. The poison control operator didn't even know. Eventually, she was sent to a special cleanup firm. $2,000 to safely clean up a broken light bulb? Yowza.
- Why is it so important to clean up a broken fluorescent light bulb the safe way? Throwing it in the garbage sends it to the landfill, where it's likely to be broken (if it's not already) by weight, then the mercury can get into the soil, and then it's vapors can spread through the air, exposing workers to toxic levels.
A beautiful 15 year old girl died due to complications of Lupus, and a medical staffs inability to allow her to seek other forms of treatment. Her mother insisted that side effects of Cellcept were causing her extreme pain, regular infections and required her to go through dialysis regularly. She ordered the doctors to stop the treatment. Shortly after, they filed a complaint with child welfare authorities accusing her of medical neglect. An autopsy report determined she died of "kidney failure due to Lupus." My heart goes to her family. I can't believe it's possible that this happens in America today. We don't have a choice as to what kind of medical treatment we receive? I know I've been pushed Flu Shots and other vaccines on me SEVERAL times by doctors. They don't even ask if you want to get it, they just say, "You're getting a flu shot." and in like three seconds it's done. [ link ]
Doug Benson says:
you read that right, beginning on 4/20, you can host your own SUPER HIGH ME screenings for you and all your friends - for free. yeah, for free. all you have to have is a projector, a DVD player and a wall - indoors, outdoors, fifty people or ten people, we don't care! it's called Roll Your Own screenings, and you can go to superhighmemovie.com to get more details, set up your own screening, or find out where someone else is doing a screening in your area. really enterprising pot heads could convince a local theatre or comedy club to have a screening - everyone gets in for free, the club or theater gets all the money from the booze, it's a total win-win. the movie will actually be playing in theaters in Portland, Seattle and San Francisco on May 9, so if you live in one of those cities you can just wait for that. but what are the rest of you waiting for? Roll your own screening of SUPER HIGH ME today.
Note: This is the movie which Michael Blieden and Doug interviewed me for while at Bumbershoot 2006. Doug helped me out with certain inabilities at the festival, and I didn't know he was filming his documentary. They asked me first if I smoked pot for medicinal purposes, and I immediately said, "Yes I do!" Then they asked to interview me about it. I'm in the final cut, short but sweet (so I'm told). Please see the movie - it's going to be fucking amazing. It's got a billion fantastic comedians in it, and it's on a subject matter that needs to be discussed.
I'm adding a bunch of posts from my former livejournal account and handwritten journals. They chronicle dealing with my illnesses. Go ahead and read them if you feel up for it!
by Miss at 3/13/2008 11:35:00 PM
The concurrence of Lupus and Fibromyalgia: implications for diagnosis and management by Robert Bennett MD
It is increasingly evident that Fibromyalgia is a common accompaniment of lupus. In North America Fibromyalgia is amongst the 3 most frequent diagnoses made by rheumatologists (1,2). Many physicians feel uncomfortable with this diagnosis as there are no confirmatory investigations and current treatment is not very effective (3). Even when the diagnosis is correctly considered, physicians may search for some alternative (and more acceptable) explanation. If an abnormal test is found, it may be seized upon with an unrestrained zeal. Often this abnormal test is a weakly positive antinuclear antibody test (ANA) and the patient is told she/he may have lupus. Even when it is apparent that the diagnosis of SLE is incorrect, the patient is often reluctant to abandon this diagnosis. Two common clinical situations are seen in relation to these issues: (i) Fibromyalgia in a Lupus patient may be missed or denied, and (ii) Fibromyalgia may be misdiagnosed as Lupus.
Please read the rest of this article at http://www.myalgia.com/concurrence_of_lupus_and_fibromy.htm.
Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have Lupus also have Fibromyalgia. It's important for people who have Lupus to know about Fibromyalgia for several reasons:
- Many of the symptoms are the same. For example, fatigue, joint and muscle pain, morning stiffness, hand symptoms without observed swelling, Raynaud's phenomenon (painful hands or feet in response to cold), numbness, and headaches can be seen in both of these disorders.
- The treatments for Lupus and Fibromyalgia are very different, but Fibromyalgia can get in the way of judging the Lupus activity. If you are being treated with immunosuppressive drugs for your lupus but have continued pain and fatigue, those symptoms may be considered evidence of continuing Lupus activity, when they might be Fibromyalgia. So there is the theoretical risk that you might be treated with higher doses of immunosuppressants and be at risk for their side effects, when such drugs don't help Fibromyalgia and may not be needed at that time for your Lupus. For example, among people with lupus, the occurrence of fatigue correlates more strongly with the presence of Fibromyalgia than with their degree of Lupus disease activity or damage.
- The proper diagnosis can alleviate anxiety. For example, if you have numbness and it can be determined that the cause is Fibromyalgia, that can be reassuring because you know it won't progress and cause more serious outcomes, as might occur in numbness due to lupus. Because Fibromyalgia doesn't have the same internal organ manifestations and potential for damage that Lupus-mediated problems have, symptoms may have a better prognosis (outlook) if they are caused by Fibromyalgia.
Discerning the difference is also important for research. Fibromyalgia seems to affect the validity of some of the measurements of Lupus activity. Whether a new drug works for Lupus or not can be hard to figure out if 25% of the participants also have Fibromyalgia and are having symptoms for that are erroneously labeled as Lupus activity.
Please read the rest of this informative website at http://www.hss.edu/conditions_14358.asp.