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.
So Stressed Out
Photos of the Fibro & lupus Tshirts
Unfortunately it's not easy to save the image and repost them on a site. But if you go to CafePress.com and search for "Lupus and Fibromyalgia" you'll find an enormous amount of products, with a variety of sayings and logos related to our illnesses.
Check it out, I had some fun looking through all the stuff.
Pain In the Ass! - Seriously.
I become extremely uncomfortable when I have to sit or lay on a hard surface. The pressure of the hard surface against my body is too painful to handle. When watching a movie or going to a restaurant or to a bar, I have to carry around a pillow so my little butt won't hurt too much. I know I can't be the only person who has Fibromyalgia that has this problem. I've been trying to come up with a solution. My boyfriend has come up with a pretty awesome purse / pillow combo design, and I recently stumbled across a website I thought might help. I can't afford one right now, so if anyone else tries it - please let me know how it works!
I promise they didn't pay me to post this. It's a pantie / padding combo, designed specifically for making a flat butt look a little rounder. Thus making the name, "Bubbles Bodywear" appropriate. It's like killing two birds with one stone for me, since it will make me look like I have an actual ass!
http://www.lovemybubbles.com/shoppaddedunderwear.shtml
What is a good way to address
people on message boards who are out of line? Probably on your blog. I'll try to make it ambiguous, but I'd like to address some of the things this guy brought up.
There is an experimental therapy for Lupus patients using UVA1 rays, and for a lot of them it improves brain function rather than hurting them physically (like UVA and UVB rays typically do.) I've read about it, and I do believe it can help people with Lupus. But I don't believe it is going to help me, because I have fibromyalgia in addition to Lupus, causing extreme sensitivity to everything from sunlight, to fluorescent lights, to medications, so much that it makes me uncomfortable.
The person who was pushing this down my throat didn't bother to listen to what I had to say, instead they got defensive over me expressing my opinion in a mature manner. It's the same way I feel about overzealous religious people. I don't push my beliefs down your throat, you pay me the same respect. Just because I have an open minded view of questioning something instead of immediately believing every word that is thrown at me, doesn't mean I'm stupid. It means I'm going to investigate it a little further.
The fact that you are self righteous, mean and obnoxious about it really doesn't encourage me to read about this therapy, which I thought was your intention. You wanted to help people, right? So do it in the most comforting and friendly way possible, instead of calling them idiots.
Funny Lupus / Fibro shirt.
It says, "My disabling chronic condition is more real than your imaginary medical expertise." I laughed aloud at that one.
The Fight on Fluorescence is Gaining Heed
Finally! This is the third time in the last two months I've heard a news story regarding the dangers and health risks of compact fluorescent light bulbs. It's a little disappointing that they don't talk about the health risks of actually being exposed to ultraviolet rays for long periods of time. I guess I'll have to seriously discuss it here in the future. Here are the highlights from the article.
- Compact Fluorescent Lights (CFL) are coiled bulbs that generate light by heating gases in a glass tube. Considered to use 50% or more less energy and last longer than incandescent traditional incandescent bulbs.
- Still many concerns regarding the amount of mercury contained in all CFLs.
- Mercury is a neurotoxin which can cause kidney and brain damage. It's only 5 mg, an amount tiny enough to barely cover the tip of a pen. However, it is still enough to possibly contaminate 6,000 gallons of water beyond drinking safety. Even low mercury CFLs can potentially contaminate more than 1,000 gallons of water beyond safe levels.
- Eventually, any bulbs (even CFLs) break or burn out, and most consumers simply throw them out in the trash because they don't know what else to do about it. A consumer called several government agencies regarding disposing of a broken CFL, and they didn't know what to tell her. The poison control operator didn't even know. Eventually, she was sent to a special cleanup firm. $2,000 to safely clean up a broken light bulb? Yowza.
- Why is it so important to clean up a broken fluorescent light bulb the safe way? Throwing it in the garbage sends it to the landfill, where it's likely to be broken (if it's not already) by weight, then the mercury can get into the soil, and then it's vapors can spread through the air, exposing workers to toxic levels.
This Week in Lupus
A beautiful 15 year old girl died due to complications of Lupus, and a medical staffs inability to allow her to seek other forms of treatment. Her mother insisted that side effects of Cellcept were causing her extreme pain, regular infections and required her to go through dialysis regularly. She ordered the doctors to stop the treatment. Shortly after, they filed a complaint with child welfare authorities accusing her of medical neglect. An autopsy report determined she died of "kidney failure due to Lupus." My heart goes to her family. I can't believe it's possible that this happens in America today. We don't have a choice as to what kind of medical treatment we receive? I know I've been pushed Flu Shots and other vaccines on me SEVERAL times by doctors. They don't even ask if you want to get it, they just say, "You're getting a flu shot." and in like three seconds it's done. [ link ]
"Super High Me" Screenings in Your Area.
Doug Benson says:
you read that right, beginning on 4/20, you can host your own SUPER HIGH ME screenings for you and all your friends - for free. yeah, for free. all you have to have is a projector, a DVD player and a wall - indoors, outdoors, fifty people or ten people, we don't care! it's called Roll Your Own screenings, and you can go to superhighmemovie.com to get more details, set up your own screening, or find out where someone else is doing a screening in your area. really enterprising pot heads could convince a local theatre or comedy club to have a screening - everyone gets in for free, the club or theater gets all the money from the booze, it's a total win-win. the movie will actually be playing in theaters in Portland, Seattle and San Francisco on May 9, so if you live in one of those cities you can just wait for that. but what are the rest of you waiting for? Roll your own screening of SUPER HIGH ME today.
Note: This is the movie which Michael Blieden and Doug interviewed me for while at Bumbershoot 2006. Doug helped me out with certain inabilities at the festival, and I didn't know he was filming his documentary. They asked me first if I smoked pot for medicinal purposes, and I immediately said, "Yes I do!" Then they asked to interview me about it. I'm in the final cut, short but sweet (so I'm told). Please see the movie - it's going to be fucking amazing. It's got a billion fantastic comedians in it, and it's on a subject matter that needs to be discussed.
Hey readers.
I'm adding a bunch of posts from my former livejournal account and handwritten journals. They chronicle dealing with my illnesses. Go ahead and read them if you feel up for it!
xo swiss!
The Concurrence of Lupus and Fibromyalgia
The concurrence of Lupus and Fibromyalgia: implications for diagnosis and management by Robert Bennett MD
It is increasingly evident that Fibromyalgia is a common accompaniment of lupus. In North America Fibromyalgia is amongst the 3 most frequent diagnoses made by rheumatologists (1,2). Many physicians feel uncomfortable with this diagnosis as there are no confirmatory investigations and current treatment is not very effective (3). Even when the diagnosis is correctly considered, physicians may search for some alternative (and more acceptable) explanation. If an abnormal test is found, it may be seized upon with an unrestrained zeal. Often this abnormal test is a weakly positive antinuclear antibody test (ANA) and the patient is told she/he may have lupus. Even when it is apparent that the diagnosis of SLE is incorrect, the patient is often reluctant to abandon this diagnosis. Two common clinical situations are seen in relation to these issues: (i) Fibromyalgia in a Lupus patient may be missed or denied, and (ii) Fibromyalgia may be misdiagnosed as Lupus.
Please read the rest of this article at http://www.myalgia.com/concurrence_of_lupus_and_fibromy.htm.
Lupus & Fibromyalgia Analysis by hss.edu
Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have Lupus also have Fibromyalgia. It's important for people who have Lupus to know about Fibromyalgia for several reasons:
- Many of the symptoms are the same. For example, fatigue, joint and muscle pain, morning stiffness, hand symptoms without observed swelling, Raynaud's phenomenon (painful hands or feet in response to cold), numbness, and headaches can be seen in both of these disorders.
- The treatments for Lupus and Fibromyalgia are very different, but Fibromyalgia can get in the way of judging the Lupus activity. If you are being treated with immunosuppressive drugs for your lupus but have continued pain and fatigue, those symptoms may be considered evidence of continuing Lupus activity, when they might be Fibromyalgia. So there is the theoretical risk that you might be treated with higher doses of immunosuppressants and be at risk for their side effects, when such drugs don't help Fibromyalgia and may not be needed at that time for your Lupus. For example, among people with lupus, the occurrence of fatigue correlates more strongly with the presence of Fibromyalgia than with their degree of Lupus disease activity or damage.
- The proper diagnosis can alleviate anxiety. For example, if you have numbness and it can be determined that the cause is Fibromyalgia, that can be reassuring because you know it won't progress and cause more serious outcomes, as might occur in numbness due to lupus. Because Fibromyalgia doesn't have the same internal organ manifestations and potential for damage that Lupus-mediated problems have, symptoms may have a better prognosis (outlook) if they are caused by Fibromyalgia.
Discerning the difference is also important for research. Fibromyalgia seems to affect the validity of some of the measurements of Lupus activity. Whether a new drug works for Lupus or not can be hard to figure out if 25% of the participants also have Fibromyalgia and are having symptoms for that are erroneously labeled as Lupus activity.
Please read the rest of this informative website at http://www.hss.edu/conditions_14358.asp.
Dealing with Divorce
My mom and biological dad never married for a couple of reasons. They were both very young and my dad was quickly on the path to alcoholism. My real dad was always a part of my life. Sometimes he lived with us and my mom supported him - even though they weren't together, and sometimes he lived somewhere across the state. He would call a couple of times a year, until he died in 2002.
Mom finally got married when I was about 14 or 15 to an older guy who owned an appliance repair business. He was a really nice guy, but quiet and different than both of us because of the age difference. I was a teenager who liked to spend time on the computer and he didn't understand that. Even though he didn't understand it, he was still a great step-father. I ended up moving out (finally) and in with my boyfriend. It was a good thing for me because my family relationships were struggling. I didn't relate to anybody, and I'm happier and a lot less stressed to be living out of the house.
After I moved out my mom and her husband's relationship steadily declined and they finally divorced in December. It's awkward and difficult. How am I supposed to talk to my step-dad about still wanting to maintain a relationship with him? It's hard for me to maintain one with anyone anyway, because of my limitations physically and transportation wise. He doesn't live movies or music or anything that I do. But, I can't lose another father. He has been so good to me and the last thing I want is for him to disappear and never speak to me again. I've decided to write him a letter. I've been thinking a lot about it the last week or so. It's affecting me more than I thought it would.
Just came to a realization...
It's definitely random and definitely depressing, but it's my blog.
My mom and dad were teenagers when I was born. They broke up a year later. He was a severe alcoholic who drifted in and out of our lives for most of my childhood. My memories of him are mixed. Some are good, but most are of him being drunk, or going through the DTs. But other than being exposed to that, which is a bit damaging, we had a decent dysfunctional relationship (if that makes any kind of sense.)
He was diagnosed Bi Polar in 2004 while he was living across the state. This was the same year that I became extremely ill and also my high school graduation. I hadn't seen him for a couple years, and he was coming to Spokane and wanted to stop by and see me before he left town. I waited all day long for him to call and let me know he was on his way. That evening, my mom arrived home from work at about 6pm. There was a note on the door from my dad saying he stopped by and nobody answered, so he was heading out of town. I didn't hear him knocking, because my room was in the basement. When I read the letter I immediately sank to the floor and started sobbing. Somehow I knew it was going to be my last chance to see him.
He committed suicide a month or so later. Not because of this incident, but because he couldn't handle the disease and addictions that had made his life so miserable.
My realization is that I always carry my phone with me. I feel a sense of regret and guilt if I miss a phone call or miss someone knocking on the door. It's less so with the phone and more with the door. Even though I know I won't miss the door being knocked on because of Stamps, I sit and listen for it and worry about missing it until someone arrives.
Some reassurance.
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.
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?
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
"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
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
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
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