xo, swiss

Lupus Shmupus

2010-05-25T18:08:00.001-07:00

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

Check it out, please. :)

Changing the title

2010-05-14T21:05:00.000-07:00

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

2010-04-12T12:27:00.003-07:00

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...

2010-04-07T19:01:00.000-07:00

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

2009-07-20T03:50:00.000-07:00

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

2008-07-17T17:18:00.000-07:00

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

2008-07-02T13:32:00.000-07:00

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"

2008-06-27T01:56:00.000-07:00

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.

2008-06-23T14:09:00.000-07:00

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

2008-06-22T21:02:00.001-07:00

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

2008-06-20T15:51:00.000-07:00

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

2008-06-13T23:58:00.001-07:00

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?

2008-06-05T13:01:00.000-07:00

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

Top Ten Incureable Diseases Currently

2008-06-05T12:57:00.000-07:00

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.

2008-05-26T14:56:00.000-07:00

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!

2008-04-12T14:05:00.000-07:00

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

2008-04-11T19:20:00.000-07:00

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.

2008-04-09T22:04:00.000-07:00

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

2008-04-04T20:34:00.000-07:00

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

2008-04-02T12:57:00.000-07:00

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.

Bloglines.com

2008-03-29T14:07:00.000-07:00

I just signed up for Bloglines.com, so make sure you subscribe to my feed!

Photos of the Fibro & lupus Tshirts

2008-03-29T14:02:00.000-07:00

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.

2008-03-28T19:13:00.000-07:00

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

2008-03-26T17:28:00.001-07:00

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.

2008-03-21T09:56:00.001-07:00

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

2008-03-19T21:37:00.000-07:00

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.

Please read this article to educate yourself about the dangers involved with fluorescent bulbs at http://www.msnbc.msn.com/id/23694819/.

This Week in Lupus

2008-03-18T00:56:00.000-07:00

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.

2008-03-15T14:41:00.000-07:00

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.

2008-03-13T23:35:00.000-07:00

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

2008-03-13T23:30:00.000-07:00

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

2008-03-13T23:24:00.000-07:00

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

2008-02-05T12:05:00.000-08:00

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...

2008-01-25T16:32:00.000-08:00

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.

Some reassurance.

2008-01-24T00:34:00.000-08:00

Sean and I met with a lawyer today. She's going to represent me for my hearing before a judge for SSI. But it could end up taking ten to twelve months to get my hearing date. My medical records will be retrieved and paid for by my lawyer, and she'll charge me later. It was a pretty brutal day to eb relying on the bus system, but Sean was there to help!

My blood pressure is high.

2008-01-18T21:07:00.000-08:00

I actually haven't taken my blood pressure, but it feels high, I tell ya.

While in grade school and high school, I was never faced with sexism. But, as an adult, I notice the way men treat each other and how they sometimes treat me different. My opinions (if and when they're ever heard, and not talked over.) are usually scrutinized more, simply because it's coming from me. It's pretty disrespectful and disappointing, especially when it is coming from someone you are close friends with.

NYT: Is Fibromyalgia Real?

2008-01-17T16:51:00.000-08:00

In this article by the New York Times, the new medication approved for Fibromyalgia treatment, Lyrica, is discussed. As well as discussing whether or not the disease actually exists.

Since I was prescribed Lyrica about two weeks ago, I wanted to respond to the article. And what better place to do so than on my blog?

First to address the questioning of Fibromyalgia's existence. There are still many people, including doctors, who don't believe it is a real condition. Which means (at least to myself) that these doctors think of it as 'lazy woman syndrome'. Fibromyalgia, and even Lupus, have been stigmatized as that for a lot of years. Even now, when there is more scientific research related to each illness, people deny it. And the only reason why, it seems, is because they can't figure out how to treat us. Why should we be branded liars, because you can't find the answers?

I need to state that I have not been paid by drug companies, as some nuts pushing herbal Fibro "cures" may imply. Since I started taking Lyrica - I've felt fantastic. Better than I've felt in five years. I have been sleeping better. I've been going on walks. I've been more motivated and energetic. I still need the pain medication but not nearly as much. I've cut down half from what I was taking before. I've been in a better mood. This medication has been a lifesaver so far. I have a little bit of hope. As for the side effect of weight gain - it's a good thing in my case. I've lost over 30 pounds in the last year due to lack of appetite. I was swallowing food whole with a drink of water for awhile, just to get some sugar in my blood. The Lupus is still very debilitating as I have extreme photosensitivity. Photosensitivity is a side effect of Lyrica, as well, so I'm getting hit hard when I go outside or to the store.

Basically, if you have Fibro, I suggest giving it a try and seeing if it's for you. Don't listen to the nuts.

Treating Fibroymalgia with Marijuana

2008-01-10T16:46:00.000-08:00

This website says that Fibromyalgia patients may benefit from use of Marijuana due to it's analgesic and anti-inflammatory properties.

"As far as Fibromyalgia is concerned, no specific clinical data exists on cannabis' ability to combat the symptoms of the condition. However, some patients report anecdotally that the drug benefits them. In Iowa, USA, a court judge has allowed a Fibromyalgia patient to use cannabis while on probation to effectively treat his chronic pain.

It does seem likely that cannabis alleviates some symptoms of Fibromyalgia. Cannabis' potential as an analgesic and anti-inflammatory have been documented by the Institute of Medicine, National Institute of Health, and others.

Additionally, cannabis has a long history as a sleep-inducing drug. One study of fifteen insomniac patients reported that over a five-week period "sleep quality was significantly influenced by 160 mg of cannabidiol (a non-psychoactive cannabinoid) as two-thirds of the subjects slept more than seven hours and … most subjects had few interruptions of sleep." An Italian research team reported that subjects who had inhaled cannabis within the last half-hour had significantly higher melatonin levels than those who abstained. Melatonin, a hormone produced by the pineal gland, is widely used to treat insomnia."

This website has a question and answer type setup. Someone asks "Is Marijuana ever prescribe for Fibromyalgia?" and a variety of people from around the world respond with their own experiences.

Withdrawing from Cymbalta

2007-12-21T19:16:00.000-08:00

I'm withdrawing from Cymbalta and they're really bad its been two days and I should be getting more in the mail tomorrow but this is insane!

The Hunt for SSI + Other Things

2007-12-20T10:44:00.000-08:00

Every year, the week before Christmas, I get a terrible chest cold / sinus infection that lasts forever. This year was no different than the previous two. I'm sitting here sick, nursing a partial root canal that was done yesterday, and trying to get some jewelry orders filled before Christmas and send off last minute gifts.

After my last denial about a month ago, I contacted some lawyers. They were extremely rude, short fused and irate with me. Besides that, they had the same old doubtful attitude about Fibromyalgia & it's existence in me. He even said, "Lupus is one of those things you can't definitely diagnose." I was just shocked that someone who is supposed to be wanting my business, someone I'm supposed to be giving money to, was treating me like this. We scheduled an appointment to meet, but I canceled. When asked by his secretary if I wanted to reschedule I said, "Uh, definitely not."

I contacted another lawyer whose legal assistant told me to acquire my medical records from DSHS and all of my other and previous doctors. Unfortunately I don't have $50 to drop on each doctor whose records I need (would amount to at least $100 to get all my records immediately - I just CAN'T afford that. there's no way.) BUT - I did get my records that DSHS had on file.

On top? A letter from my current specialist doctor in September stating very clearly "SHE WILL NEVER BE ABLE TO RETURN TO WORK."

So much validation just in one photocopy.

After all the bullshit I've been through with doctors and government agencies and lawyers.

I can't even express how much relief just that paper gave me. Just that sentence. I'm not crazy, I'm not lazy, I'm not anything that uneducated, self-absorbed people want to believe I am.

Happy Holidays everybody.

xo swiss

Fibromyalgia Harder to Cope With Than Other Conditions

2007-11-16T20:14:00.000-08:00

"Research says with a high level of certainty that Fibromyalgia sufferers find it more difficult to cope with their illness and the symptoms and effects than of other rheumatic illnesses. Among the studies Fibromyalgia sufferers' most common complaints are: worrying about whether their pain will end, anxiously wanting the pain to go away, unable to stand their pain."

Please read the rest of the article at http://www.ei-resource.org/news/fibromyalgia-news/fibromyalgia-harder-to-cope-with-than-other-conditions/

It's Another One of Those Angry Times

2007-11-15T00:14:00.000-08:00

Where so much stupid bullshit has built up into this massive pile of anger, frustration, stress and depression inside of me.

I got my denial from SSI again. I now have to appeal before a trial judge. I have to somehow find a lawyer, after all the ones I've already talked to have basically told me it's going to be impossible.

I actually have good news, for once!

2007-10-03T11:46:00.000-07:00

At least on one battlefront!

Department of Social & Health Services actually hooked me up with an amazing caseworker. She has Lupus & Fibro. also, and is working hard on my behalf to make it so I don't have to worry about things.

I also sent in my disability function report for myself and the one Sean filled out for me, into my adjudicator. I wrote a lot, and tried to not forget anything. I'm really hoping they don't blow off my photosensitivity. I'm willing to go get tested for it. I'm actually willing to expose myself to the Ultraviolet so that they can see what it does to me.

SSI Letter from Me.

2007-09-26T12:22:00.000-07:00

Hey guys. Sorry I didn't get back to all your comments yet, but I got them and I sincerely appreciated everything you guys suggested and said. Thanks so much for being so supportive, and I'm always thinking of you guys and hoping your bodies are doing better than mine. ;)

So, this is the farthest I've gotten with disability. Someone finally called me and said he was sending me an activity form and also one to my mom and to my boyfriend. He said I could type a paper of my view of my condition, as many pages as I want.

I decided to really get on it today, and this is what came out - sort of stream of consciousness.

+++
In 2002 I was diagnosed with Evan Syndrome. That summer, I went through Methotrexate and Rituxan chemotherapies. The Rituxan put me into remission. By late 2002 I had already gotten myself a job as a customer service representative at the mall information booth. I loved my job, and was feeling good again. I decided to enroll in community college for the 2003 school year.

In December of 2003, I became sick with the flu. I took a few days off, went back to work, and it just steadily got worse. From December 03 to February 04, I missed several days of work, was hospitalized twice, and I just couldn't seem to get better. I was doing school and work, and I had to make a choice. I decided to quit my job. I soon had to quit school too.

I relapsed remission in Summer 2004, and was treated with more Rituxan. After another successful Rituxan treatment which put me into remission again, I still didn't feel the same. Since then, I haven't been able to work, because of my exhaustion, weakness, pain and extreme sensitivity.

By 2005 I had been diagnosed with Lupus and Fibromyalgia. My doctor didn't inform me much about my illness, and I didn't learn until recently that not only do I have a bad reaction to sunlight, but a worse reaction to any fluorescent lighting, as do a lot of Lupus patients. I've been taking steps to avoid sunlight and UV rays at any cost. I use SPF 15 moisturizer on my face, then I apply another layer on my face and head to tow with SPF 55. I also wear a hat and long sleeves, but they don't shield very well. It only takes about 20 minutes for me to have a reaction to fluorescent lights (sweating, tiredness, shaking, weakness, and nausea.) and you can't go anywhere without fluorescent lights nowadays. It's even to the point that regular incandescent bulbs could be banned altogether. After being exposed to fluorescent lights and sunlight, I am also more susceptible to getting sick or having a Lupus flare, which makes every part of my body a lot worse.

My daily routine isn't very fun. It's incredibly frustrating for my body to be so physically exhausted, while I want to be doing something productive. If I push myself too hard, it makes everything worse, and I've learned that by now. I have a lot of allover aches as well as a very low pain threshold. I have Fibromyalgia tender points which I'm always bumping into, which is excruciating. I can't sleep at night because it hurts to lay on my body: I can never find a comfortable position that doesn't feel like I'm putting pressure on a bruise somewhere on my body. There is always an area of my body that is in pain. It just never ends.

It's like the Lupus and Fibromyalgia treatments cancel each other out. I want to get more exercise and work my weak muscles, but I can't be out in the sun, I can't be under UV rays, it hurts to move, it hurts to lay. I get lightheaded, weak and nauseas when I do any kind of physical activity.

My stress levels are still through the roof, which isn't helpful at all to the illnesses I have. When I have a panic attack, I get sick. I have panic attacks, when I just can't find any help. My doctor from 2002 - 2006 was abusive and cruel, causing me to have a bad nervous reaction when at an appointment or calling my doctor. I feel like I've tried every possibility to get someone to notice that I need medical attention that is impossible for me to supply to myself, and either nobody can or nobody wants to hear me.

+++

Suggestions? Help? PLEASE.

More Doctor Babble that is probably Repeats of Information.

2007-08-11T14:50:00.000-07:00

You guys know how it is though, not feeling good = no motivation.

I'm going to try to make this post as summarized as possible, and if you have any questions or want me to clear anything up for you, just comment. :)

When I was 17 I was diagnosed with Evans Syndrome and started seeing a pediatric oncologist. It took three biopsies to figure out what I had, because it was that whole process of elimination thing. I saw him from 2002 until 2006, even though I was way past pediatrics. The reason I kept seeing him was because I was on horrible state medical and no rheumatologist on the planet would accept it. I had no choice. He insisted I call him when I was sick or had any problems, rather than going to a general practicioner, which you're apparently supposed to do.

Through those years that I saw the ped. onc. he was a really strange guy. My mom and I didn't like him. He made us wait in the waiting room for literally four or five hours every appointment, and for a long time we were going to appointments every week. When we did get to see him he would babble on endlessly about horses. His responses to things like yeast infections were, "That's a hygiene problem." Everybody knows yeast infections are common in people with low immune systems. He made masked sexual remarks re: my boyfriend and I, he would prescribe me 20 pain pills at a time, saying I could take one every four hours. When I called back for a refill, he would yell at me, even though I took them as prescribed and as needed. We finally had to stop seeing him when he told me one day that I was going to need Cytoxan. I came back on the day of the appointment, and nobody had even set the appointment. Apparently now the doctor wasn't sure he wanted to do Cytoxan. So I spent upwards of a month preparing myself mentally for this challenge. I was absolutely terrified. His response by my angry reaction? To act like it was my fault. Not only that, but while I'm sitting there crying my eyes out, he says to my boyfriend and mom, "She must be really difficult to deal with when she's like this." They were shocked and I stormed off.

At the next appointment, I had figured out another doctor. My grandma convinced her rheumatologist to accept my insurance. Dr. 1 said he would send Dr. 2 my entire chart, meet with him, talk with him regarding my case. Three months later when I arrived for my appointment with Dr. 2, Dr. 1 still hadn't sent the chart. The faxed half of it and gave up. It's the most pathetic excuse for a clinic on the planet. He mentally abused me for years and I allowed it because I didn't know any better, and now there isn't anything I can do about it. Don't let yourself get treated like this by a doctor, because now I have a doctor who cares and I know I didn't need to be treated like that.

Anyway, now I'm re-applying for disability and Dr. 2 can only describe my state for the last year, not for the last 6, and Dr. 1 is a jerk who won't respond to our calls. Is that even legal?

Disability Redetermination called me today and are sending me another form to fill out. The guy I talked to was very nice, and said I could attach as many pages as I needed describing the state of my condition, in my eyes. He is also sending forms to my mom and Sean.

I may have a chance, then again I say that each time around.

Denied!

2007-07-25T16:20:00.000-07:00

50 Ways to Encourage a Chronically Ill Friend

Somebody just posted a bulletin containing this link on myspace. This is so awesome - please please please check it out. http://www.everydaygivingblog.com/2007/07/50-ways-to-enco.html

DENIED!

So I received a denial letter from SSI Disability. Except this time, I didn't flip out. For the first time since I've been applying, I haven't completely collapsed into an anxiety attack. I think it's partially because I slept most of the day and feel like I'm getting sick, but also because this time the letter actually made me feel like they took out a little bit of time to look at what was going on with me. (I've made my responses to parts of the letter ::red::.)

July 23, 2007

We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training and work experience in determining how your condition affects your ability to work.

You said you are disabled due to Evans Syndrome, fibromyalgia, Lupus and RA. The records support these conditions and limitations, however, they do not preclude all work activity.

[ The problem with their decision is that it is based on a questionnaire which, while being something like 15 pages long of repeat questions over and over, isn't that in depth. I have four conditions that all result in different and opposite results, making my health extremely unpredictable. I feel good one day and absolutely miserable the next. This makes it impossible to hold any job. Also, my environment directly contributes to the way I am feeling. Meaning any type of stress, loud noises, etc, but also things like fluorescent lights which I'm extremely sensitive to. ]

In addition, your anxiety is currently under control. Based on your description, we have determined that you can perform the type of work you have done in the past as a cashier. Because you can still perform some type of work, you are not considered disabled and your claim is denied.

[ Funny, I didn't realize I had been treated for anxiety by anyone. Other than being on Cymbalta by my rheumatologist (which while it is an anti-anxiety med, it is also a time released anti-depressant and pain reliever as well.). By the way - Cymbalta is something commonly prescribed to people with Fibromyalgia, so it's not directly related to anxiety. While my rheumie knows I am constantly anxious, they haven't done anything to treat me for it. I have been unable to find any kind of mental health, which means I'm in a constant state of worry and have two or three panic attacks a week. Nobody has even asked me about this, and if they had - I would've told them exactly that. But somehow they have determined that my anxiety is under control. Weird. About me being a cashier - I was a cashier under fluorescent lights which made me physically sick every single time I worked. I didn't know this was what was making me ill until this year, because my doctor never informed me that Lupus caused me to be sensitive to fluorescent lights. ]

Needless to say - I'm appealing. I've already called and requested the forms.

Is it normal

2007-07-18T11:28:00.000-07:00

for people with Fibromyalgia and chronic health conditions to be really anxious and stressed out by their families?

I don't see them very often. After I moved in with Sean, since I don't have transportation, the only times I see my mom are when I need a ride to the doctor. She does it on her day off, and claims to understand that I desperatley need help and says that it's not a big deal.. But then she acts agitated if I ask her to run me by one more place, or if the waiting room time is really long. She says things like 'It's okay, but my whole entire day off is gone.' And I feel saying that I'm really sorry I'm such an inconvenience. But when I -do- say that, she acts as if it's a completely absurd notion to even think of. Yet everything she does, tells me she is burdened and annoyed by me. Same with the rest of the family. They don't seem to realize how ill I truly am, seem to blow it off or downplay it. They don't consider how easily affected I am by stress. They don't realize that the things they say to me most of the time, really hurt my feelings. I cry almost every time I see any of them. Often times I have panic attacks after it.

It's immensely frustrating to be having anxiety attacks and worrying all the time, but where am I to go to get help for it? No counselor will accept me because of my lack of insurance and I have absolutely no way to pay for it. I'm at the end of my rope, I'm so anxious and I desperatley need some sort of help with it. If anybody has any suggestions as to what I can do to get me SOMETHING that will help with anxiety. Where do I go? (And please, don't say meditation. Because I try it, and this anxiety is on a completely different level. While focused breathing and meditation helps for small anxieties, it does no good when I'm having a panic attack.)

I'm so stuck.

I saw SICKO and it made me feel even more hopeless and stuck.

rituxan and prednisone

2007-07-12T12:47:00.000-07:00

at my doctor's appointment on tuesday i was told that i should probably go back on Rituxan soon..

I was also told to withdraw from Prednisone one more mg, so I started that yesterday.. And at the moment I have severe menstrual related symptoms, in addition to it being hot. i haven't been able to mkae myself food for a couple of days. yesterday sean made me hashbrowns and i had a salad with meat and veggies last night.. today nothing... first time i've had a really bad hypoglycemia attack in awhile. i started shaking and sweating uncontrollably.. had to go lay down. i ate some chips and a glass of juice.. i just don't think i could eat anything else and i definitely can't make anything. no money to orderstuff, so im just going to wait until sean gets home.

Gross post!

2007-06-19T15:53:00.000-07:00

The first thing I've posted that is explicitly gross and graphic. I'm writing this blog, partially, to make people aware of the various little daily things that people with compromised immune systems have to deal with, that other people typically don't. We're so much more susceptible and sensitive to illnesses and reactions, that if something can happen - it probably will.

A couple of months ago I had a really awful sinus infection. There was mucus until no end, a tingle in my right nasal cavity that was so painful I had an ice pack on it most of one week. After that, I developed a painless bump on my lower lip. It wasn't mushy, there wasn't any blood or even anything for blood to come through, so I didn't worry too much. After a week or two of having it, I got a little freaked out - thinking it was a lip tumor or something. I researched and discovered it was likely a mucus filled cyst left over from my sinus infection.

This giant bump on my lip not only affected my gorgeous smile (ha ha.) but was also in one of the most frequently 'bitten' areas on my mouth. I would try to eat and end up chomping down on my cyst, which I must have bitten a hole into because this morning, one little touch of my lip and out comes a mouthful of what looked like snot and blood. Sexy, yes? It tasted like a delicious chocolate chip milkshake, too.

Yuck. At least the giant bump is gone.

One of the hardest things to deal with

2007-06-14T14:23:00.000-07:00

when you have Lupus and Fibromyalgia (or other autoimmune diseases) is the social aspect. It's extremely difficult to make and keep friends when you're ill. People are too busy and too wrapped up in their own stuff (not that that's a bad thing.) to care about what you're dealing with all the time. There's only so much they can feel for me. I constantly feel sick, so I don't like to leave the house. I have to apply a lot of sunscreen, which still doesn't shield me from feeling sick to my stomach being in any sunlight at all. It's a big hassle. I get tired easily, and I feel like I just bring everybody down and am a big pain to be around.

It's really lonely and depressing to always watch your friends go out and have a good time together at a bar, or go out to eat together, or just go do anything.. I never really get to be involved, like normal 22 year olds do.

I'm going through a flare and am just really lonely right now. I've felt this lots of times, and I'm sure readers have had similar experiences and feelings.

Anxieties

2007-06-12T20:58:00.000-07:00

unless you are sick and unable to care for yourself for a long time, with no income, you have no idea the stress it causes to have to rely on others. for three years i've been depending on the generosity of friends and family to survive. i have no money, so sean, ben, chad, my mom, and sean's parents take on the brunt of my expenses.

i completely flipped out today.. i feel awful that i can't thank these people sincerely enough. i feel like i'm not worth it.

Lupus & UV Rays from Fluorescent Lightbulbs.

2007-06-01T15:24:00.000-07:00

The other day I dugg an article about the possibility of banning regular lightbulbs for the, apparently, more energy efficient fluorescent bulbs. Recently, I had been informed from a friend who also has Lupus that not only are we (people with lupus) sensitive to sunlight, but also to the UV rays in fluorescent lights as well. I was completely unaware of that, as no doctors have bothered to inform me on Lupus whatsoever. Everything I know about it has been research I've done on the internet or information given to me by other sufferers.

I googled lupus and fluorescent bulbs so I could find an article to link in my comment that would back up my claim. I found this article which brought up the point that hadn't quite dawned on me yet: the sick I feel when I go to the store isn't from having to be up and out and walking around.. It's from the damn lights!

When I go to the store, I end up getting extremely nauseas, sweaty and so sick I have to go sit at the front of the store and have Sean finish the shopping. It's really bothersome. It's almost like I'm trapped in a giant box of radiation, the longer I'm in there, the worse I feel. It just literally sucks the life out of me. It's pretty bizarre, but makes me realize I need to wear long sleeves and high sunscreen whenever I leave the house. And also cements the fact that - leaving the house sucks.

Since... Forever?

2007-05-10T12:50:00.000-07:00

I've had indications of both Lupus and Fibromyalgia dor as long as I can remember. Hind sight is always 20/20, right? But I was just a kid, so maybe I thought that everybody felt this way.

For as far back as I can remember, it hurt my back to lay on the gym floor during school for pushups, or stretching, or whatever else. It didn't seem to bother anybody else, but it was next to unbearable for me.

When I visited Hawaii as a child, and often during Summer weather, I'd develop what I thought was a heat rash, mostly on my nose, chin, neck and chest. I always thought it was from sweat.

I keep having weird dreams I can't remember, I can only feel. I'll wake up feeling like, in dream world, Sean and I have negative energy, but in real life we're really great. I also find myself in dreamilke states of my past. Blurs and colors and isolated old rooms from childhood.

I'm feeling

2007-04-28T22:12:00.000-07:00

i'm very stressed out about everything right now. the lack of money yet need for it is driving me absolutely berserk. i'm worried about my family. i'm worried because one of my wisdom teeth is coming in, finally, and it decided to do it at the worst time possible - when i don't have insurance. i'm exhausted from worry, and i can't take my mind off of it. i've been trying, but i just don't know how. i have so many things going through my mind, they are all fleeting worries that blend into one another. i'll be worrying about one thing and that will remind me of something else to worry about and so on and so forth. i've been like this since i was a kid.

surprisingly, otherwise, i'm not feeling too horrible. my wisdom tooth is bothering me so it's probably helping me not focus on the body pain so much.

i want to go to a chiropractor.

Status Update

2007-04-26T07:52:00.000-07:00

Woke up at around six and have been awake ever since. My fingers and feet have been freezing even though I turned up the heat, heated them under water and am now under the covers. My right hand is so cold. I also feel like I am definitely sick now. I'm coughing.

Feeling...

2007-04-25T15:29:00.000-07:00

The last couple of days I've been noticing that tingle in my sinuses again. It comes and goes, but when it is here, it's incredibly annoying and painful. I'm not congested or anything, but the last two days I've been much more tired than usual. I think I'm either getting the sinus infection again, I've got intense new allergies, or I don't know. I'm also running a low temperature. im going to take some antihistamine.. maybe it'll help.

Fibro Symptoms I relate to

2007-04-21T12:39:00.000-07:00

(This post is mostly just for my benefit)

Severe Fatigue - I've had this problem for quite some time. Seems like after the two horrible weeks of Prednisone tapering, my energy level improves a lot.
Poor Sleep - I have a lot of dreams that I don't remember, but leave me with a bad, anxious, angry, guilty, scared or just bad feeling. Especially lately.
Post Exertional Pain - After anything physical, I feel light headed, very flushed, hot, short of breath, and nauseas.
Tension Headaches - I've been complaining of these since my diagnosis of Evan's Syndrome. I still have a big problem with them, and tylenol doesn't come close to touching the pain. I recently discovered that an ice pack really helps.
Cold Intolerance - I've mentioned before that when in bed, my body is OK under the covers, but if I put my arm or shoulder outside, it becomes stiff and very sore.
Unexplained Bruising - Self explanatory.
Chest Pain - I get a sharp pain in my chest sometimes that increases with breathing in and out. Usually happens a few times a week.
Jaw Pain - Every so often my jaw clicks, becomes very sore. I clench my teeth a lot. I find this to be more evident when going through Prednisone withdrawals.
Dizziness - I get dizzy most of the time with I stand up.
Depression and Anxiety - I've suffered from both since childhood.
PMS - My periods are very painful. A lot of painful cramps, extreme fatigue and dizziness.
Restless Leg Syndrome - Self explanatory.

DEA agents seize medicine from sick woman

2007-04-20T13:23:00.000-07:00

"I don't know how many times I have to fight for this before I can get some peace and not violate any laws," said Robin Prosser, who said medical marijuana is the only thing that helps her manage the pain from a lupus-related immunosuppressive disorder. DEA - "Shut up, we own you."

read more

Feeling... (handwritten)

2007-04-16T08:55:00.000-07:00

Headache across forehead and temples all day long. worse when I bend over and stand up. also accompanied by extreme dizziness, faint of breath and low grade fever.

Shoulders, upper back sore. Arms extremely weak all day long. Difficult with writing, dressing, anything involving moving.

Very tired all day, took nap for about two hours, still very tired yet restless.

Also lots of menstrual cramps, lots of nausea (off and on) but I still have an appetite.

Status Update

2007-04-14T15:32:00.000-07:00

I've been fighting a sinus headache since that sinus infection I had about a week ago. I'm going to try alternating hot and cold compresses and rinsing my nasal passages with saline. I've been having a lot of pressure and pain across my cheeks, eyes and nose. I also have a slight tingling feeling behind my right eye and into my right nasal area. It's really sore and annoying, and it's starting to affect my vision.

http://www.entnet.org/healthinfo/sinus/sinus_headaches.cfm
http://www.theentsite.com/nasal_saline__.html

I've also discovered a few articles on the web supporting Fibromyalgia scientifically, and even and article specifically addressing Lupus AND Fibromyalgia. Everybody needs to be retaught everything they ever learned about Fibromyalgia. Even people who have it.

http://www.myalgia.com/concurrence_of_lupus_and_fibromy.htm

Incompetant Social Workers Who Just Don't Care

2007-04-12T21:59:00.000-07:00

(Otherwise known as "The Story of my Life")

Dealing with state or federal assigned caseworkers is hellish. The one I was assigned to most recently says 'I don't know' as a response to questions 95% of the time. I requested she talk through my mother or through Sean, instead of myself, since I have a hard time controlling my emotions with them and not getting completely frustrated and angry.

When the pharmacy initially called and told me they had cut my insurance, I started having a panic attack. The panic attack somehow triggered the worst nosebleed I've ever had. I was gagging and choking, while trying to talk on the phone and crying at the same time. I've requested help for my anxiety, but they refuse to pay attention to it. Everything gets 'pooh-poohed' by them.

When the caseworker finally called me back, I told her that she was cutting medications from me that I need. If I were to stop taking them altogether, my kidneys would fail. Adrenal failure or something (more factual posts will be coming soon, I'm just tired and need to write this before I forget to.). She said "How is that?" skeptically. And I told her, because it was the closest comparison I could come up with in that state, 'Because withdrawing from Prednisone is like withdrawing from HEROIN!'. The woman's response? "Well, I've never heard THAT."

When I called the doctors office and told them they pulled my insurance out from under me while I was going through withdrawals, the nurse was extremely concerned. SHE knew the severity of their actions. These people need better training and they need to do better research about the people they're supposed to be helping.

Boy Oh Boy Am I Ever Fed Up

2007-04-11T23:46:00.000-07:00

When I went in for my first appointment to meet the DSHS CSO (Department of Social & Health Services Social Worker) I knew from the first time that I was going to have problems with her. It's been six months and she's still saying 'i don't know' just as much as the first time we met. I'll go into more detail about that meeting and my other experiences with her at another time, but let's just say I've heard a lot of 'I don't know's" on her behalf. At that original meeting I indicated to her that I was suffering from extreme social anxiety, so she sent me to an psych evaluator.

1) The lady had a flight of steps in her office, kinda difficult for someone who is disabled and there for that reason, to climb up.
2) She barely said to words to me. I took a 500 question true or false quiz, then I did two timed connect the dots. I'm not exaggerating by any means.

From the psych evaluator's amazing test giving skills, she decided that my anxiety was the result of my 'abuse' of PREDNISONE and HYDROCODONE. ABUSE.

Status Update (handwritten.)

2007-04-06T00:28:00.000-07:00

From the amount off Benadryl, tylenol and my regular medications taken to treat the sinus infection, my kidneys are suffering. I'm 'on the verge' of a UTI. I drink tons of water and juice and still the symptoms are there.

I'm sure the Prednisone withdrawals aren't helping with my kdineys, either. Plus the side effects of loss of appetite and nausea means I'm eating next to nothing with probably doesn't help either.

Fibromyalgia Exercise Routine Theory

2007-03-12T12:47:00.000-07:00

I started seeing a rheumatologist who immediatley started weening me off of Prednisone. Prednisone is a commonly prescribed oral steroid used for a variety of things from ear infections to autoimmune diseases and arthritis. People with Fibromyalgia and Lupus, like myself, often take it for prolonged periods of time which isn't very good for you, but is supposed to be helpful with pain. I had been on 10 mg everyday for two years. Withdrawling from Prednisone is like withdrawling from any other drug or alcohol or smoething like that. It's very difficult and painful. When I tapered down to 9 and 8, it wasn't THAT bad. I was in pain. sweaty and tired. When I tapered down to 7mg this month, it was horrible. I couldn't eat for a week, was sweating constantly, couldn't sleep but I was exhausted and my bones were creaking and popping and aching like crazy. I have six more months of this. I hope it doesn't get worse, but I have a feeling it is going to. But on the plus side - after that week of awfulness, I feel pretty good! More energy than I've had in awhile, in a better mood, I'm not having as many hot flashes. I am in a lot more pain in my joints, but otherwise I feel pretty good. I hope that when I continue with the withdrawls, if the week of withdrawl is terrible - hopefully that means I'll feel even better after each one. Let's keep our fingers crossed.

My hypothesis : Every month my withdarwl will be worse and wosre until I am completely off of the medication. But after that withdrawl, I'll be getting more energy, but accompanied with more joint pain. Hopefully my doctor and I can figure out a good pain regime. I'm starting a warm stretching routine. With Fibromyalgia, you're supposed to start out very slow and gradually increase.

Here's what I'm doing:

Warming my muscles in my leg all over for about 30 seconds. just enough to warm the muscles. stretch each of these muscles in this order gently for 15 seconds EACH (bottom of foot, ankle, calf, knee, upper thigh, inner thigh, groin.) each leg. (once i get up to 30 seconds i will increase to stretching my upper thigh and calves while standing.)

warm arms and sides and shoulders of individual arms, then stretch each muscle individually (i have my own way of stretching i can't erally explain. but generally the same concept. 15 seconds at first for each muscle.)

warm front, beck of neck, collar bone, etc and stretch each side individually, 15 seconds each.

warm stomach and stretch stomach foe 15 seconds.

everyday i'll test my limits.. try to make it another 5 seconds gradually, and i want to do the regime at least twice a day.

i tried it today and i had some pain immediatley in my shoulders and back. i'm going to keep trying it and blogging about it though. i guess i just have to keep pushing even if it hurts.

Just some thoughts

2007-02-22T16:59:00.000-08:00

looking back, my senior year of high school was the hardest i'd experienced in my seventeen years. but at the time, it didn't completely make me collapse. i think that it was some subconcious mechanism in my brain, trying to protect me from the hardships to come.

in grade school, i excelled in reading and most other studies. but, as with most kids, middle school was a bit of a shock. i have a hard time remembering seventh and eighth grade, even though i didn't drink or do drugs or anything like that. i was a good kid, but i had a troubled family life. i went to one school for seventh grade, and moved again just before eighth grade.

at home, i was the only-child of a single mother who worked as a bartender trying to make ends meet. even though my parents were never married and broke up a year after i was born, they remained friends. my dad was a severe alcoholic, and during middle school, he lived with my mom and i. most of the time, he was so drunk he was more like an irritating sibling than a father. i'd been dealing with his alcoholism for a long time and I knew (for the most part) how to handle it.

at school, most of the kids knew eachother because they had the advantage of going to the same grade school together. i didn't, which meant i didn't have any friends. and nobody wanted to get to know the sickly girl with a lisp. and while my grades were great in grade school, they dropped dramatically in middle.

Goals + Worries

2007-02-21T02:07:00.000-08:00

x. call Spokane Family Health (?) about getting a general practicioner. Must accept DSHS insurance. Also ask if possible to get a woman's exam there.

x. find a physical therapist on the south hill who is accepting new adult patients with DSHS insurance.

x. find an eye doctor on the south hill who is accepting new adult patients with DSHS insurance.

x. find a dentist on the south hill who is accepting new adult patients with DSHS insurance.

about a week ago i realized i had a small swollen lymphnode behind my left ear. it was sore for less than a day, the it went down. i've been checking it periodically, since then. today, i discovered it was back, slightly larger than before and much more sore. thankfully i'm seeing the doctor on march 1st.

also - my mom called and filled my pain pill prescription. dr. kenney's office did it in a hurry. it made me smile that they actually seem to take it seriously, unlike dr. reynolds.

Cymbalta

2007-01-06T22:41:00.000-08:00

yesterday at the doctor, they put me on a new anti-depressant, cymbalta. it's a pain reliever, anti anxiety and anti depressant in one. it completely knocked me on my ass yesterday, but i have to take one everyday. for three weeks, then i start on 2 a day. i'm also getting lowered off my prednisone. one mg every month she said.. so it's going to take me probably a year or so to get off of it. and it's going to be painful, but hopefully the end results are worth it.

i'm supposed to start recording everything, how I feel, my exercise, etc. i have fibromyalgia, i guess, and not rheumatoid arthritis, but i do have lupus and evans. so they told me one of the best things for fibromyalgia is exercise, slowly and gently. my grandma is bringing me a video of fibromyalgia exercises.. and i read a few websites that say to walk and cycle a lot. just slowly at first, for about five minutes at first, and add a minute or two everyday until you're at 45m for walking and 60m for cycling. i need to get my bike up here, and there's no way i'm going outside until it's 40 degrees warmer out.

i slept pretty good last night, probably from the cymbalta, but my anxiety is worse and it's slightly helping with the pain.the np said that I would probably have weird side effects for a few weeks, but that it will go away hopefully. like the anxiety probably. she told me to call her if i had any other side effects though.

advanced global personality test

2006-12-16T17:33:00.000-08:00

It's actually pretty pathetic how right it is. (This was so fucking self-indulgent, but it made me think and look at myself from an outside perspective and from an inside perspective. Something I've been needing, I think.)

Advanced Global Personality Test Results

Extraversion	\|\|\|\|\|\|\|\|\|\|\|\|	43%
Stability	\|\|\|\|	13%
Orderliness	\|\|\|\|\|\|\|\|\|\|\|\|	46%
Accommodation	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	70%
Interdependence	\|\|\|\|\|\|\|\|\|\|\|\|	50%
Intellectual	\|\|\|\|	16%
Mystical	\|\|\|\|\|\|	30%
Artistic	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	63%
Religious	\|\|	10%
Hedonism	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	70%
Materialism	\|\|\|\|\|\|	30%
Narcissism	\|\|\|\|\|\|	23%
Adventurousness	\|\|	10%
Work ethic	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	70%
Self absorbed	\|\|\|\|\|\|	23%
Conflict seeking	\|\|\|\|	16%
Need to dominate	\|\|\|\|\|\|	30%

Romantic	\|\|\|\|	16%
Avoidant	\|\|\|\|\|\|\|\|\|\|\|\|	50%
Anti-authority	\|\|\|\|\|\|\|\|\|\|\|\|	50%
Wealth	\|\|	10%
Dependency	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	70%
Change averse	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	63%
Cautiousness	\|\|\|\|\|\|\|\|\|\|\|\|	43%
Individuality	\|\|\|\|\|\|	30%
Sexuality	\|\|\|\|\|\|\|\|\|\|\|\|\|\|	56%
Peter pan complex	\|\|\|\|	16%
Physical security	\|\|\|\|\|\|\|\|\|\|\|\|\|\|	56%
Physical Fitness	\|\|\|\|\|\|\|\|\|\|\|\|	44%
Histrionic	\|\|\|\|\|\|	23%
Paranoia	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	83%
Vanity	\|\|\|\|\|\|	30%
Hypersensitivity	\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|\|	83%
Female cliche	\|\|\|\|\|\|\|\|\|\|\|\|\|\|	56%

Take Free Advanced Global Personality Test
personality tests by similarminds.com

Stability results were very low which suggests you are extremely worrying, insecure, emotional, and anxious. (Couldn't be truer.)

Orderliness results were medium which suggests you are moderately organized, hard working, and reliable while still remaining flexible, efficient, and fun.

Extraversion results were moderately low which suggests you are reclusive, quiet, unassertive, and secretive.

trait snapshot:
paranoid tendencies, irritable, anxious, fidgety, dependent, worrying, emotionally sensitive, prone to regret, depressed, second guesses self, somewhat fragile, dislikes change, prefers organized to unpredictable, suspicious, phobic, craves attention, not a risk taker, low self control, very sensitive to criticism, unadventurous, does not make friends easily, defensive, obsessive, low self esteem

just for me to know, the description of the stuff i scored highest on. (the ones i'm willing to admit are in pink.

accomadation - 70% - nice, happiest when helping and giving to others, does not mind serving others, unselfish, generous, self sacrificing, other-centric, warm, caring, loving, peaceful, modest, has trouble saying no, has trouble being firm, does not enjoy fighting, very loyal, prefers team victories over personal glory, wants everyone to get along, not manipulative, drawn to public service fields, good listener, comforter, not materialistic, honest, agreeable, nurturing

hedonism - 70% - willing to break the law if the monetary benefit is great enough, likes tattoos, likes strip clubs, prone to substance abuse, prone to shoplifting, thinks marijuana should be legalized, not opposed to breaking laws, promiscuous, prone to cheat in relationships, kinky, likes to dress provocatively, believes pleasure should play a central role in life, can be crude, believes religion is foolish, does not worry about consequences of actions, addictive tendencies, more a night person than a day person, erotic, more likely to have been on anti-depressants, gets attention through negative behavior, reckless with money, prone to nihilism, unpredicable, self destructive

dependency - 70% - not confident, prone to mistakes, indecisive, desires security and support, fears having no guidance or support, frequently feels envious, not productive without reassurance, gets very attached to people, feels guilty when they disagree with people, seeks acceptance and recognition from peers, dramatizes their suffering, impressionable, can be talked into doing things, fears being unwanted or unworthy of love, never knows what to do next, personality is centered around low self esteem issues, swayed by emotions, can't handle people being mad at me, freezes up in stressful situations, influenced more by others than self, avoids responsibilities, life lacks direction, prone to paranoia, prone to shame, daydreams about people to maintain a sense of closeness

paranoia - 83% - suspicious of others until they have proven themselves trustworthy, more doubt than belief, preoccuppied with death and suffering, fears being harmed or controlled, bitter, looks for hidden meaning in things, personality is centered around low self esteem issues, feels misunderstood, thinks people would not like them if they really knew them, defensive, often experiences disgust, love-hate relationships with most things, likes to test people's loyalty, thinks life is overrated, focuses on suffering, feels like an outsider, existentially depressed, does not trust what people say, prone to shame, suffers from depression, knows the dark side of life very well, attracted to things associated with sadness, would rather remain alone than risk rejection, hard to get to know, makes enemies, loner

hypersensitivity - 83% - tends to get too emotional, can't take it easy, feels gloomy and distraught frequently, more past than future, more feeling than doing, not confident in their opinions or abilities, dislikes themself, prone to paranoia, affected by the moods of others, broody, envious, ideal love seeking, expressive, dramatic, tempermental, impressionable, swayed by emotions, fears loss and separation, poor self image, gets very attached to people and things, hopeless romantic, focuses on suffering, desires security and support, defensive, suffers from loneliness, feels invisible, fears rejection in relationships, can't control romantic feelings and thoughts, existentially depressed, suffers from depression, prone to shame, prone to panic attacks, feelings guide most of their behavior, can't handle people being mad at them, dreams about a rescuer, daydreams about people to maintain a sense of closeness, familiar with the role of victim, worries they will make the wrong choices, conflicts between thoughts and feelings, desires more attention

MRI

2006-12-13T15:22:00.000-08:00

Quick note - Got an MRI today.

MRIs and CT Scans.

2006-11-28T17:32:00.000-08:00

months ago, i requested dr. reynolds send paperwork to GAU so I could get disability assistance, and he never did. and he had THREE MONTHS to send my medical records to Dr. Kenney, and never did. So today, Kenney had to call them and request they fax my information, but it was all useless crap. So he has to start from scratch, which isn't exactly a bad thing. he took SEVEN VIALS of blood - which was incredibly painful. they had to poke me twice.. the worst part is the needle being held in and being knocked around and bumped when they're filling the vials. i hate that. i get uncomfortable with the touriquette around my arm, and them poking at my swollen veins. i hate that. then, when they don't get the needle in the vein, they have to poke the skin, WITH THE NEEDLE IN IT, to try to get it in the vein, and let me tell you - it's not fucking comfortable. it's not like it's agonizing pain, but it hurts, and it's uncomfortable, and i don't suggest it. the doctor noticed some concentration / memory loss problems and decided to get me a brain scan / mri.

people generally have no idea what an mri or ct scan consists of. a lot of people automatically assume that you're in a big closed coffin like tube for hours unable to move. those kinds of scans really aren't THAT common. the most common mris aren't always of the brain / head, and it's not a long tube you're in. you're in a big round hole that makes loud clanking noises and you have to stay very still, but it's usually only for about 20 minutes. sometimes less. and CT scans are even BETTER. there's the big round hole that makes a lot of noise, but it only takes a minute and you're in and out.

this one is going to be incredibly uncomfortable. i'm going to have to be laying there for an hour to and hour and a half getting this brain scan. i told dr. kenney that i didn't think id' be able to stay still for that long.. for those of you who don't know what it is like to have lupus, ra or fibromyalgia, it can be really hard to just stay still. there is no comfortable position - especially not on an mri table. it's harder than a rock and NOT comfortable in ANY way. Thankfully, dr. kenney is a great doctor - unlike my last one, and was actually concerned about my anxiety. so i'm getting sedated.

Eye Pain

2006-11-22T13:03:00.000-08:00

My eyeball hurts really, really bad.

i figured out that it's probably something related to lupus or ra. i have an appointment with dr r. on monday. argh. i hate going to see him i don't want to go to an appointment with him. why do i have to wait three months to see this other doctor? this is ridiculous. so now i'm going to stay positive until we can figure out what's wrong with it. maybe it will just go away on it's own.. but the lupus and ra websites said that it isn't good to leave it untreated. i worried sean about it at work. =/

i looked up a bunch of stuff about our plants and potted a plant today. it was fun.my eyeball hurts.

Troubles With DSHS

2006-11-06T11:33:00.000-08:00

I have problems with my medical / food stamps / etc ALL THE TIME. The latest in said developments?

First of all, my food stamps didn't go through until the 3rd of the month. When I called my social worker to ask about the day they should be available her extremely helpful response was 'I dunno.. Usually it's on the first, just keep checking.' And when I first picked up the EBT card I asked for a welcome pamphlet, but was told they didn't have them.. However, whenever I do research about DSHS online, it says I should've recieved a welcome packet with my EBT card. Nothing.

Today, I go to the doctor, then I go to the pharmacy to fill my prescriptions for Prevacid (because I have acid reflux, and when I don't take Prevacid at least once daily, I get horrible, awful, heartburn.) and for more pain killers. This is my usual pharmacy, I know the pharmacist, he knows me, etc. He tells me that I was denied both. 'Person not covered.' WTF?! That's really great for a person with severe illnesses and an anxiety problem, tell them they don't have medical. So, my mom paid $20 for my pain medication, $5 for some lesser strength antacid, and we came to my house to get the phone number to call my social worker.

It wasn't even HER fault! It was some other random person. Since my program changed (meaning I got food stamps.) they had to switch to another program on my file. Well, they didn't do it right, she put me down for food but removed me from medical. She didn't apologize or anything. She said 'Want to come pick up your coupon?'

Um, no, we don't want to have to pay for your mistake. She is sending it in the mail, and hopefully I'll be covered soon. Also, the doctor sent in my paperwork for CASH assistance, yet DSHS hasn't recieved it yet. Which means, it's probably going through DSHS's horrible and long process of filing and processing paperwork.

Another Denial.

2006-10-06T17:28:00.000-07:00

Fifth time. Not disabled by their standards.

New House.

2006-09-26T17:27:00.000-07:00

Sean's parents are helping him buy a new house! It's a 4bd 2ba, we'll each have a room and we'll have three roomies. I haven't been there yet, but I'm really excited.

I'm really hoping my disability gets approved and I can start paying my way, and doing new things.. I want to build a couple websites, (Sean and I are in the early stages of putting together a comedian reference website.) and also create an etsy store where I can sell the various things I make.. Jewelry, crochet hats, crochet washcloths, etc.

I don't see the dr again until 10/23, then we move into the house on 10/25. busy month!

Swollen Eyed Girl

2006-09-23T22:20:00.000-07:00

A few days ago, I told Sean that my eye was bothering me. The next morning, it was super red and swollen. I have to go see Dr. R tomorrow.

I'm really anxious and am sort of freaking out in my head, about everything.

Bumbershoot 2006

2006-09-16T18:25:00.000-07:00

So this was my first year attending Bumbershoot, the Seattle arts and music festival. They have a billion music acts and each year the comedy has been getting better and better. When I found out that Tinkle was going to be performing at Bumbershoot, I decided then and there I would go. I didn't know any other music or comedy I'd want to see at that point. Then they released the whole lineup. Nothing musical I had any kind of inkling to see except Atmosphere and Sean wanted to see A Tribe Called Quest. But the comedy lineup was PHENOMENAL.

Not only were Tinkle, a comedy 'troupe' that consists of three of my favorite comics of all time, David Cross, Todd Barry and Jon Benjamin.. But also Zach Galifianakis, Doug Benson, Maria Bamford, and a bunch of other comedians I'd never heard but have heard OF. As we got closer to Bumbershoot, I began to worry more and more about being out in the sun, being tired, walking around.. Plus everybody I talked to said that the comedy theaters are usually packed to only standing room, and if you saw one show, there was NO WAY to make it into the show directly after that.I stressed, but then I saw Doug Benson say that if anybody needed help getting into shows to let him know.

Doug gave me his number and I called him when I got to Seattle. Thanks to him, Sean, Chad and I got to sit in each theater between setting up / emptying and filling the theater. So we had amazing seats the entire time.

The first day we saw John Mulaney, Maria Bamford, Dana Gould, (Eric) Slovin & (Leo) Allen, Zach Galifianakis, Aziz Ansari, Nick Thune, Mary Lynn Rajskub, Doug Benson, and Tinkle at the Intiman Theater. The Mulaney/Bamford/Gould show I had crappy seats all the way in the back, but the rest was front and center, basically.

The second day we saw ASSSSCat (with emcee Doug Benson.), Nick Thune, Mary Lynn Rajskub, Aziz Ansari, Trapped in the Closet (hosted by Paul Scheer and Aziz Ansari with guest panelists Leo Allen, Matt Walsh, Mary Lynn Rajskub, John Mulaney, and Rob Huebel.) and Best Week Ever Live (Paul F Tompkins, Christian Finnegan and Doug Benson). While waiting after ASSSSCat got over, Michael Blieden, a documentary filmmaker interviewed me for Doug Benson's upcoming project. He's doing a documentary on Marijuana. Kind of like Super Size Me only 30 days of smoking weed. I just gave a short interview about medicinal and how it helps for me so much. It was really great to meet Michael Blieden - who I was a fan of without even knowing it. He did the Comedians of Comedy movie AND show, and the upcoming Zach Galifianakis Live at the Onion movie.

The third day Sean and Chad ran to get me some food while I waited outside the handicapped entrance at the Charlotte Martin theater. While there, I happened to be sitting by the stage entrance, where Doug Benson strolled out and hung out with me for a few minutes. After that Arj Barker came and sat on the other side of me, then out runs Zach Galifianakis. They introduced me, and I got star struck. Doug, Arj and Zach surrounding me plus this great filmmaker filming it all. It was a great time. I was then interviewed for awhile more about medicinal, so I'm thinking i'll be in a decent part of the flick. So be sure and watch for me. ;)

Darker Side of the Moon

2006-08-30T12:55:00.000-07:00

For a recap - the day I went in to do the Cytoxan (chemo) a nurse told me I didn't have an appointment for that day and that Dr Reynolds wasn't even sure he wanted to go ahead with the Chemo. I cut my hair, I mentally prepared myself for over a month and that's what happens. We have a meeting with him, I freak out because I'm incredibly angry and he's acting like it's MY fault. He even said to Sean and my mom 'This must be difficult to deal with all the time.' I'm not fucking like that all the time, I am pissed because YOU fucked me over, and are blaming it on me!

So I get referred to Dr. K. We called ahead and asked if he accepted my medical - DSHS, which most people don't. The receptionist said they did, we sent me paperwork and tried to make an appointment today, but the lady said they don't accept my medical. Just wonderful. Even if they did I wouldn't be able to get in until November. Lovely. I need to see someone ASAP. My lupus and ra are currently untreated except steroids, which I'd like to get off of EVENTUALLY. I've been on em for a good two years now.

Not only that but the last time I got pain meds from Dr. R., he prescribed me Hydrocodone instead of my usual Oxycodone. The difference is Hydros have a bunch of tylenol in them, Oxy's don't. The tylenol makes me nauseas, headachey and hurt my body really bad. We have been trying to get ahold of him since Thursday of last week. We've been calling every day and the nurser promises he'll call us tomorrow. but he's NEVER there when we call and he hasn't returned the call yet. He's calling tomorrow and I'm LEAVING tomorrow at like 6pm! This is SUCH bullshit. I'm SO SICK OF EVERYBODY IN THE MEDICAL / GOVERNMENT SUCKING FOR A LIVING.

on a lighter note -

bumbershoot is so close, and doug benson is probably going to help us get into some good shows. i'm terrified i won't get into some of them. i'm not going for music and the comedy tents are usually sold out.

Anxieties

2006-08-12T10:12:00.000-07:00

Monday I'm going in to Dr. R.'s office and signing a medical release form for Dr. K. Then I'm calling and making an appointment with him. Hurray.

I'm a little worried about my pain medication. I only got 20 the last time I filled them so they'll be gone soon. :(

Five Days Until It Begins.

2006-08-07T17:19:00.000-07:00

Only 5 more days until the chemo starts. I don't even know if we can go to Bumbershoot. We don't have a ride.

Scared. Nausea. Lack of energy. Lack of hair or skin pigmentation. Lack of usefulness.

I made a pretty necklace today. I am proud.

My Doctor is a Nutcase.

2006-08-07T13:59:00.000-07:00

That is about as nicely as I can put it.

We went in, already angry. We came out infuriated.

He sensed I was pissed. Basically, he said it was his nurses fault and tried to blow off the fact that HE TOLD ME we were doing Cytoxan for SURE. To cancel my upcoming Bumbershoot trip because I was going to start Cytoxan.

It was scheduled to be the Friday after I got back from Seattle. But while in Seattle, I got an outrageous tooth infection and I had to get it pulled immediatley upon coming back to Spokane. Obviously you can't begin chemotherapy with a big hole in your mouth that hasn't healed at all yet, so my mom called and postponed the chemotherapy for two weeks (August 4). We called a couple weeks ago and asked if we could do it sooner (last Friday, July 28th) because my tooth (or hole where a tooth used to be) healed really fast. The nurse said no, we're doing it for sure on August 4th. My mom says ok, assumes the appointment has been made [even though she never talked to the scheduler], and I prepare myself mentally for a month for this six month intensive chemotherapy treatment where I'm going to lose all my hair and be a hermit during. (Which I cut all of my pretty red hair off - FOR NO FUCKING REASON.)

Sean, Chad and I show up on Friday, bags in hand, in my pajamas, ready to get my chemo. I'm psyched. Let's do it. The head nurse comes out and says she doesn't think my appointment was set for today and she needs to go talk to the doctor and figure out what is going on. After waiting for an hour or more, she comes back and schedules me an appointment for Monday (today.) and that he's not even sure he wants to do the Cytoxan. This is the first I've heard.

Today we went in and had a big blow out. I was so mad, I stormed out and said flat out "I'm leaving right now because i'm really pissed." My mom and Sean were pissed as well. My mom basically told him we were sick of his bs and we're finding a new doctor. Basically, what went down is he didn't take ANY kind of responsibility for HIS screw up, blamed us and his nurses for everything. At one point during the meeting he said to Sean and my mom, "It must be really hard dealing with this." How the FUCK is that supposed to make me feel? I just got done telling him I had extreme anxiety because I have to depend on people so much. Then, right before i left the room - this is was really pissed me off.

He said "Y'know, this has been hard for us. And you have been difficult." I don't remember specifics.. But basically it's been hard for them to help me. I was like "Isn't that what you are supposed to do when someone is sick?" and that was when I broke down and said, "I'm just leaving right now because I'm really pissed off." Sean chased after me, my mom stayed back and kinda yelled at him. She came back out.

He put me back on Methotrexate, a higher dose. six 2.5mg pills a week. i just took them. Wooh can't wait to feel even shittier than I do now. I'm supposed to call on Thursday and figure out what's going on.. But I think I'm just going to call a rheumatologist, Dr. K.

I'm so fucking angry.

I Wish People Would Quit Jerking Me Around

2006-08-05T17:22:00.000-07:00

I'm so fucking angry.. I've been so angry since we left the hospital. I'm infuriated. I've managed to have a good time today and laugh through stuff, but my mind always goes back to the fact that every day I get screwed over more and more by the people who are supposed to be HELPING me.

I just want to hit and throw and kick and scream and cry.

I just want to fucking rip somebody's eyeballs out.

I'm so tired of all this shit.

No Chemo All of the Sudden

2006-08-04T15:36:00.000-07:00

I walked into the appointment, ready for my first cytoxan treatment. I had a pillow, Sean and Chad were carrying my backpack / cooler.

The nurse walks out and tells me I don't have an appointment that day, and then says that the Dr. "wasn't sure about the Cytoxan."

But he didn't bother to tell me he changed his mind, he just changed it, then made me look and feel like a fool.

When my tooth was pulled [after the Cage concert in July], I asked my mom to reschedule me for last Friday, but when she talked to the nurse (not the scheduler) they said they wanted to wait until after this Friday.

So, today [Friday], Chad, Sean and I get all ready and go to the hospital. We show up and Nurse V. comes out and says, "We're not sure you have your appointment for today. We're trying to figure it out." An hour later I am told that Dr. R. doesn't want to do Cytoxan anymore, he wants to put me back on Methotrexate [which didn't do anything for me last time.]

So I worried, I cut off my long hair for this? What kind of Doctor doesn't even talk to me about the decisions he makes? I am so furious!

Disability Determination Response

2006-08-01T18:00:00.000-07:00

So I got a letter today from DSHS. I got excited thinking it was a denial or approval of cash benefits.. But I open it and for the first time, they're actually making me go to a doctor to get looked at about my condition.

"It was determined that we didn't know enough about your condition so we're sending you to this doctor to get a physical exam." The thing is? They're sending me to a chiropractor. If anybody knows what autoimmune diseases have to do with chiropractors, please let me know. If anything, she [the social worker] should be sending me to arheumatologist for a full exam. I'm thinking, since she's made silly mistakes before, that she saw 'arthritis' and automatically thought 'bones', therefore thinking 'chiropractor'. Why does the government hire people who know nothing about their jobs?

I'm beyond tired of getting fucked over by the government.

Pre Chemo Anxiety

2006-07-31T17:17:00.000-07:00

the whole ordeal last week has given me a lot of anxiety about myself. i was finally at a place where i was happy with myself. i have friends who make an effort and like to hang out with me, who like me for me, so i started to kind of like myself. now i'm worrying that i am making my friends upset or sad, but i'm being paranoid because i know i'm not. and i know that the person who said that is far more self righteous and self involved than I am. at least I have a reason to be - what's hers?

i just needed to vent. i'm tired of losing sleep over this and ripping my stomach to shreds. everybody's told me a million times that what was said was ridiculous and that i should pay it no attention, but i can't help it.

note: i had an anxiety attack last night.

Craziness.

2006-07-29T17:16:00.000-07:00

So I've been an emotional and internal wreck since the things Emily said to me. I hate myself right now and I hope she's pleased.

I'm so terrified. Sean is asleep next to me and I'm crying. I am scared of the chemo, dying, not being a good friend, my parents and family hating me. I want to talk to someone about what I'm going through without being afraid of being too focused on myself.

My tooh is gone.

2006-07-20T17:15:00.000-07:00

sigh.. so much anxiety about everything.

lindsey, puffy, richard, ella and sean did amazingly well taking care of me this weekend and i wish i could thank them the way they should be thanked.

i'm sorry for ruining your trip.

Weekend of pain.

2006-07-19T17:13:00.000-07:00

so this weekend i went to seattle to see cage and the sword.

friday night i developed an excruciating tooth ache which lasted until sunday day. it deprived me of sleep and i was in so much pain i couldn't go see the sword on sat. night. i went to the er on saturday and spent over an hour sitting in this little tiny room at virginia mason, more like a cubicle, the pain worsening, and the asshole gave me a shot in the mouth of like.. anbesol. he said it would last eight hours, enough time to give me some sleep and antibiotics to take away the infection to in turn take away the pain. the numbing shit didn't do anything, practically. it numbed to a bearable throb, but it was still a 6 or 7 on the retarded 1-10 scale hospital's use. so i went back to richard and ella's house (the people we stay with when we go to seattle.) and continued to be in misery. ella, who is amazing, couldn't tolerate me being in pain anymore and was astonished the er doc didn't write me a scrip for some pain killers. i know now, but nerve pain is probably some of the worst pain imaginable. she called her dentist on call and explained the situation. amazingly, this woman who didn't even know me, prescribed me some hydrocodone. i was soo relieved. i'd make it through this.
then i got the fucking things and i puked everytime i took one. i couldn't keep ANYTHING down. even when i ate with them, i'd just puke it up and the pot wasn't helping the nausea AT ALL - for the first time ever. so it's like 11:30pm and i'm in the bathroom taking a bath for the 3rd or 4th time the pain. Richard is out driving around Seattle looking for 'oil of clove' which EVERYBODY told me was easy to get, but guess what? it's fucking not. then we call university of washington and they have a dentist on call in the er. they say they're closing now, but to come in in the morning.

i did. and i waited 3+ hours. and i finally got some fucking help. i was a ball of anxiety all weekend, especially sitting in that hospital er waiting room with a bunch of sick people with my immune system. i had to cunnive my way into getting seen earlier than some people who had been waiting a long time but i mean, this shit was down to the bone.

first she looked at it and said it was restoreable, which would mean a root canal. then she took the xray and said that decay is down almost to the bone and it may not be restoreable.. and even if it was, they couldn't do a root canal there - they don't have the equipment. i told the lady everything about my medical shit, about my pain killers, how i couldn't keep down the hydrocodone but i take oxycodone regularly and it doesn't make me nauseas. she said she'd have to prescribe me a higher dose because nerve pain is so bad that my reg 5mg dose wouldn't do much. So she gave me 24 oxycodone 7.5mg with 350mg tylenol. worked like a fucking charm. i got some sleep, the swelling has gone down but it sitll hurts.

anyway, i got to see cage. and he stage dived and landed on my head in all his sweaty hiphop glory. i didn't see him jumped, and when his belly flopped on top of my head i realized and went 'YES!!!' and sstarted pushing up. his sweat poured all onto me and mixed in with mine. yes. it was sexual. just kidding, but it was an AMAZING SHOW. I can't WAIT for the next one. unfortunatley camu tao wasn't there, but charlie chan was, and cage was sick and he performed amazingly. brilliant show.

other stories to come later. oh by the way - i'm going tomorrow to probably get my tooth pulled.

Hair today, gone tomorrow.

2006-06-30T17:11:00.000-07:00

One of my friends came over tonight and chopped off all my hair in preperation for the Chemo. I don't like it.

Cravings!

2006-06-29T17:10:00.000-07:00

I'm really craving a big plate of Chinese food. Something people who work take forgranted - the ability to choose what you want to do and eat. I basically get to eat whatever someone has puchased for me or given to me.

It sucks not being able to just order a meal for yourself when you have a craving. Especially when it's your favorite food and you haven't had it in like three months.

Massage Therapy Not Covered By DSHS.

2006-06-27T22:04:00.000-07:00

Period.

Even if it is prescribed by a doctor and/or through a physical therapist. The worst part is the lady I talked to kept referring to it as "feel good therapy".

When you are this tense, it doesn't particularly feel good.

My future and my love.

2006-06-27T17:07:00.000-07:00

Yesterday at my doctors appointment he informed me that on July 21st I'm going to start six months of chemotherapy called Cytoxan. My hair will fall out, and my immune system suppressed for that long as well.

I'm scared and I know that losing my hair is going to be a ton more traumatizing when it actually starts to happen..

My point is that.. The next six to eight months are definitely going to be hard.. Maybe harder than anything I've ever been through, but I am happy with the fact that I'll have Sean there to hold my hand and listen when I'm angry and frustrated and sad and in the Why Me? mood. He's done an amazing job the last two years, and I don't doubt he will this time.

Cytoxan

2006-06-26T21:29:00.000-07:00

Chemotherapy. The bad kind. It makes your hair fall out. I told him about the Cage concert next month and he said he'd start it after the show, so I could have fun before I went through the treatments. But he said I can't go to Bumbershoot in September, as planned.

Once a month chemo for six months. So for six more months at least I'm going to be really susceptible to infections. I need to brace myself for what is the biggest risk - getting sick and not being able to fight it. It's how a lot of people with similar disease go.

Today, I was really sad to tell Sean. I've really put him through enough.

I hate to think it, but sometimes I feel he'd be better off without me.

Let's lay out my number one flaw.

2006-06-22T23:30:00.000-07:00

When I'm stressed about something of actual importance, I tend to stress and freak out about stupid stuff. Why do I dwell on and mentally freak out about stuff that doesn't fucking matter?

Who cares what kind of outlook you THINK I have, I know what the next six months hold for me. I've dealt with this for FOUR YEARS. I am terribly sorry if I'm a tad bitter, but get the fuck over it. Please allow me a good 24 to 48 hours to be pissed, bitter and fucking murderous. Everybody can't have a positive outlook ALL the time. I'm not Mother Teresa, and I've never claimed to be.

It isn't you who has to worry about germs because the smallest of infections will land me in the hospital. It isn't you who is already practically confined to the house because you're just too tired to get dressed, get somewhere, stay there for 1+ hours, and get back home. Just those menial everyday tasks that everybody does, exhausts me. I think I do pretty good with not being crabby ALL the time. Leave me alone.

So many times today, I wanted to just shut off all the lights, shut the door and just sit alone in the darkness. I've cried a lot today, my eyes are so heavy and the bedroom is still so hot.

Sitting alone on the front porch at dusk I started thinking about how I'm not ready to leave Sean. I'm not ready to give up on life. He's my reason for keeping going. I think our relationship is incredibly special. I love him so much and I want to spend more time with him. We've got trips to take, concerts to see and comedians to meet.

I'm so worried about medical next year.

2006-06-22T18:58:00.000-07:00

How am I supposed to live on $400 a month, IF I GET SSI. I'm going to be forced to be a child for the rest of whatever time I have left.

"Evan's Syndrome is serious, rare and has an 18% mortality rate."

I'm never going to be able to buy my own clothes or groceries or anything! I won't be able to live on my own. I really feel like I just bring everybody down. I don't know why anybody even wastes their time, sometimes.

I want to just give up caring or expecting or anticipating anything. I just get disappointed or disappoint.

Sorry I'm such a pain in the ass.

Doctors Visit

2006-06-22T16:57:00.000-07:00

I'm beyond tired, just from the visit. It's so exhausted getting jerked around constantly.

Meds I'm currently taking: Seasonal, Prevacid, Cephalexin, Prednisone, Naproxen, Plaquenil, Oxycodone.

Tomorrow I need to call Dentists and see if they take DSHS medical for adults. Most places only accept it for children 18 and under. Which means that adults are forced to get their teeth pulled instead of fixed. Also, I need to call physical therapists and see if they do massage therapy or accept DSHS.

I am so tired today, yet so much to do. It never ends.

I've been in such a mood lately.

2006-06-21T23:15:00.000-07:00

Just generally agitated. I keep taking it out on Sean, then he'll snap back and it's a cycle. We both usually snap out of it after a short time, so it's not that big of a deal. It just really bothers me that I'm so irritable. I don't want to be, and I know it's ridiculous to get irritated about these things, but I really can't help it.

I just feel like I'm a giant burden to everyone today. Every other day I tell myself I'm not going to depend on people anymore, but I'm forced to time and time again. It makes me feel terrible to go out with friends and to not be able to pay for dinner. They always pick up the tab. I really want to contribute.

I love Sean a lot. He is amazing to be so patient and supportive of me, despite the stress I put him under.

We're back from the funeral.

2006-06-20T16:51:00.000-07:00

I'd never been there before. My general impression? Yech. The lack of trees there makes me appreciate Spokane's beauty more than I used to.

The service was sweet and sincere. I cried, even though I'd never met Art. Listening to Sean's aunt talked about him so sweetly coupled with the fact it was the day after Father's Day, made me think about my dad. I cried a lot for him.

"Don't got to apologize, for the way I feel. Nothing can stop me now."
- Sun Spot by Nine Inch Nails

Oh how I art sweaty.

2006-06-17T00:07:00.000-07:00

It's shocking I'm still a little chubby with how much I sweat. I love like a pint a day. I was pretty tired after we woke up but I dozed for 10 or 15 more minutes.

"Everyday, it's a dream, it's obscene,
I wish I was there, far away,
Havin' fun in the sun, my feet in the sand.
But, here I am, freezing cold, shovelin' snow.
But, why should you care?
I wish I was there. I wish I was there.
It always begins, and never ends.
Winter breeze, anti-freeze,
Screamin', "Please, I wish I was there."
- Caipirinha by Peeping Tom

Paper Beads

2006-06-16T23:30:00.000-07:00

basically just cutting long triangular strips of magazine paper. And my back and shoulder started hurting about 5 to 10 minutes later. I kept pushing, but the pain got so bad, I had to stop. I live a boring life. Doing stuff hurts, so I don't do much stuff.

Sean's grandfather died so we are driving across the state with his parents for the funeral. It's goign to be difficult going on a trip with how I've been feeling. I have motion sickness, and it's uncomfortable to sit in one place for a long period of time.

I'm so tired. I took all my medications at like 2 am, then went right to bed. Big mistake. I woke up 4 or 5 hours later feeling nauseas. Thankfully, I made it to the toiler on time, but man, did it taste bad. Just like delicious pills. Yech.

At this very moment, I'm feeling very tired and my joints are achey. Mostlymy knees and shoulders and fingers and arms and head. So.. Only like 75% of me hurts right now. The other 25% is probably just too tired to give a damn.

I want to help

2006-06-16T00:04:00.000-07:00

Somewhere in the back of my mind I feel like writing about what goes on in my head. body and attempting to get on disability. Could really help some other people who are going through something similar. Just to let them know I've been there. I am there. So far I see no way out but I chug chug along. Is it conceited to feel like you could make a difference? I think - who cares? Then I realize that there are plenty of people who would benefit from learning of my struggles. Friends and family members of a young adult battling any kind of serious illness could benefit from reading my entries. See how someone with Fibromyalgia and Lupus.. How their brain works.

I wish I could figure out something to do. I just don't feel good.

Potential Bumbershoot 06 Trip?

2006-06-15T00:03:00.000-07:00

so for those of you who don't know who tinkle is.. it's only a group made up of three of the most amazing comedian / performers ever. david cross (arrested development, mr. show, etc.) h jon benjamin (home movies, dr. katz), and todd barry (of just being badass todd barry fame.) called Tinkle.

well, they're slated to perform in seattle at bumbershoot this year. sept 2, 3 and 4. i'm thinking the chances of sean and i going are really really high. hopefully i'll be on disability by then and i'll have some me money saved up. plus, since the festival is like a week after my 22nd birthday i bet some awesome family member would contribute to the tickets cost. three day pass is $70 if we get them in advance. totally worth it though, for how many comedy acts perform. we probably won't even see much music, especially considering there isn't anybody i particularly want to see. atmosphere is playing, who i'd like to see. the blood brothers are playing who i know sean would like to see. that's all i know of right now. plus the possibility of patton oswalt or brian posehn being there is likely.. i think they've both been there before. maybe the comedians of comedy will perform as a whole.

the sooner i go to bed, the sooner i get to eat delicious amazing pho which i haven't had in like three weeks and i'm dying without it.