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.
Photos of the Fibro & lupus Tshirts
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.
Pain In the Ass! - Seriously.
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!
http://www.lovemybubbles.com/shoppaddedunderwear.shtml
What is a good way to address
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.
Funny Lupus / Fibro shirt.
It says, "My disabling chronic condition is more real than your imaginary medical expertise." I laughed aloud at that one.
The Fight on Fluorescence is Gaining Heed
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.
This Week in Lupus
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 ]
"Super High Me" Screenings in Your Area.
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.
Hey readers.
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!
xo swiss!
The Concurrence of Lupus and Fibromyalgia
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.
Lupus & Fibromyalgia Analysis by hss.edu
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.
Dealing with Divorce
My mom and biological dad never married for a couple of reasons. They were both very young and my dad was quickly on the path to alcoholism. My real dad was always a part of my life. Sometimes he lived with us and my mom supported him - even though they weren't together, and sometimes he lived somewhere across the state. He would call a couple of times a year, until he died in 2002.
Mom finally got married when I was about 14 or 15 to an older guy who owned an appliance repair business. He was a really nice guy, but quiet and different than both of us because of the age difference. I was a teenager who liked to spend time on the computer and he didn't understand that. Even though he didn't understand it, he was still a great step-father. I ended up moving out (finally) and in with my boyfriend. It was a good thing for me because my family relationships were struggling. I didn't relate to anybody, and I'm happier and a lot less stressed to be living out of the house.
After I moved out my mom and her husband's relationship steadily declined and they finally divorced in December. It's awkward and difficult. How am I supposed to talk to my step-dad about still wanting to maintain a relationship with him? It's hard for me to maintain one with anyone anyway, because of my limitations physically and transportation wise. He doesn't live movies or music or anything that I do. But, I can't lose another father. He has been so good to me and the last thing I want is for him to disappear and never speak to me again. I've decided to write him a letter. I've been thinking a lot about it the last week or so. It's affecting me more than I thought it would.
Just came to a realization...
It's definitely random and definitely depressing, but it's my blog.
My mom and dad were teenagers when I was born. They broke up a year later. He was a severe alcoholic who drifted in and out of our lives for most of my childhood. My memories of him are mixed. Some are good, but most are of him being drunk, or going through the DTs. But other than being exposed to that, which is a bit damaging, we had a decent dysfunctional relationship (if that makes any kind of sense.)
He was diagnosed Bi Polar in 2004 while he was living across the state. This was the same year that I became extremely ill and also my high school graduation. I hadn't seen him for a couple years, and he was coming to Spokane and wanted to stop by and see me before he left town. I waited all day long for him to call and let me know he was on his way. That evening, my mom arrived home from work at about 6pm. There was a note on the door from my dad saying he stopped by and nobody answered, so he was heading out of town. I didn't hear him knocking, because my room was in the basement. When I read the letter I immediately sank to the floor and started sobbing. Somehow I knew it was going to be my last chance to see him.
He committed suicide a month or so later. Not because of this incident, but because he couldn't handle the disease and addictions that had made his life so miserable.
My realization is that I always carry my phone with me. I feel a sense of regret and guilt if I miss a phone call or miss someone knocking on the door. It's less so with the phone and more with the door. Even though I know I won't miss the door being knocked on because of Stamps, I sit and listen for it and worry about missing it until someone arrives.
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