from cymbalta and they're really bad its been two days and i should be getting more in the mail tomorrow but this is fucking insane... i hate it

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. I haven't mentioned it here year, but I've been selling some stuff on etsy lately. http://mcswiss.etsy.com mostly jewelry, and there's only one item up right now - but soon more.

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 immediatley - 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

it's a social bookmarking site for chicks. kinda like digg. i signed up, you should too.

i posted a fibromyalgia link and nobody has 'loved it' yet.:( we can get the word out. <3

swiss (thanks for all your comments!)

http://www.ei-resource.org/news/fibromyalgia-news/fibromyalgia-harder-to-cope-with-than-other-conditions/

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.

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 ssa again, i now have to appeal before a trial judge. i have to get a lawyer, yet all the lawyers i've contacted have all but told me to go fuck myself.

Does anybody know how I would go about filing a medical discrimination complaint about certain doctors offices in the area?

Please help!

Thanks

I haven't forgotten about my friends here at livejournal. I want you guys to know that I'm thinknig of you and appreciate all your comments, even though I can't return them very often. It's been a big struggle using the computer at all lately due to my photosensitivity.

I have a few more things that I want to address in my blog soon, and I want to focus not only on my illness but also on the other things I enjoy - comedy, music, art, crafts.

Thanks for being a listening ear. :)

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.

I will update more in awhile, but I'm feeling nauseas!

Swiss

My inspiration typically comes from a desire to practice and get better at whatever craft I am doing. I like to be interested in the project, like everyone does, so I often combine my project with another hobby I like. Like cross-stitching video-game characters, or making a shirt for my dog to be ridiculous in.

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 or my mom and make me feel like a drug addict. 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 bawling, he says to my boyfriend and mom (right in front of me) "She must be really difficult to deal with when she's like this." I stormed off.

At the next appointment, I had figured out another doctor. My grandma convinced her rheumie (one of the best docs in america) to accept my insurance. Dr. 1 said he would send Dr. 2 my entire chart, meet with him, talk with him etc. Three months later when I arrived for my apt. 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 shit I can do about it. Don't let yourself get treated like this by a doctor.

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.. I.. May have a chance.

Clearly, Sean and I are animal lovers. We particularly relate to and admire dogs, but I'm sure we'd love any animal. This weekend, a couple that Sean works with asked us to dog sit for them. We've done it once a year for the last two or three years for the same people. We don't even really know them, but we are close to their dogs. How it started, was we came over for a work party at their house, fell in love with their two doggies, then after that they asked us to dogsit.

This time it's a little different though. Not only do we have our own house now, but we also have our own dog. She has only been ours for a month or two, but she's grown attached to both of us. Since I never leave the house, she and I are very close. I decided to come up and hang out with Sean at the dogsitters last night, and Ben watched Stampy.

Next to their bed is a book called 'Animal Speak' about animal totems. I looked up the animals that I had been drawn to and really like, and they actually really make sense as my totems. I hadn't even thought about their characteristics and traits, but it makes complete sense.

The Owl is keen to sensing how people are feeling - which I think I am good at. I'm a pretty good judge of character. The Fox talks about invisibility - which makes sense in light of my illnesses and my feeling of invisibility though not necessarily a GOOD thing, and the Squirrel talks about preparedness and gathering, which makes sense because I'm constantly thinking about or wanting to do something preparedly. I think with the more I meditate, I should try to focus on these animals. Since I love animals and these make sense, perhaps the Owl, Fox and Squirrel can help me come to terms and make sense of things.

Owl - Magic, Omens, Wisdom. The owl is the symbol of the feminine, the moon and the night. The owl is the bird of magic and darkness, of prophecy and wisdom. The owl is associated with Athena. An owl totem gives you the power to extract secrets. Meditate on the owl and things will be revealed. Listen to its voice inside of you. You will hear not what is being said by others, but what is hidden. You can detect subtleties of voice that others cannot. People cannot deceive a person who has an owl totem. Owl people can see into the darkness of others souls. Most owl people are clairvoyant because of this ability. It can be very scary at times. Learn to trust your instincts about people. Let your owl totem guide you.
- Snowy Owl: Conserve your energy until the time is right; be observant of your surroundings. Has the power of prophecy.

Fox: Magic, Shapeshifting, Invisibility. Fox are seen as totems throughout the world: the Chinese believed they could take human form, in Egypt the fox brought favor from the gods, there was a fox god in Peru, foxes help the dead get to the next life in Persia, Cherokees, Hopi other American Indian tribes believed in its healing power; the Apache credited the fox with giving man fire. Since the fox lives "between times" -- on the edge of land, visible as dusk and dawn, and can guide the way to the Faerie Realm. A fox can teach you to control your aura so that you can be more in harmony with others and the world. If you have a fox totem, learning to be invisible is very important in your life. Imagine yourself blending in with your surroundings, becoming part of the background. Be very still and quiet. Through practice you can be unnoticed even at a party or in a crowd. I have an acquaintance who used this power to evade several muggers; he stood there in plain sight next to a building, and blended himself into the wall; they did not see him and left without harming him. It can be done! A fox totem also teaches good eating habits; the fox eats small amounts frequently which medicine is now telling us is better for our health. But fox people already knew this.The fox is a wonderful totem to have.


Squirrel - Gathering, Activity, Preparedness. The gathering power of Squirrel is a great gift. It teaches us balance within the circle of gathering and giving out. They remind us that in our quest for our goals, it is vital to make time for play and socializing. Squirrel teaches us to conserve our energy for times of need. If your totem is Squirrel or Squirrel has recently entered your life, lighten your load of things that are unnecessary – things that you have gathered in the past and may be cluttering your life – thoughts, worries, and stresses. Squirrel is also the totem of action. Ask yourself are you too active, not active enough, afraid of enough, hung up on accumulating and collecting. Squirrel people tend to be a little erratic – trying to do many things at once. Take the time to stop and listen to your inner self – and don’t forget to play!


Bee

post song lyrics, but I found my perfect song to Sean..

tegan & sara - i know i know i know

From hundreds of miles, yeah, you cry like a baby.
You plead with me, shout, scream, tell me I'm staying.
I know I know I know, I'm still your love.
Back from the last place that I wanted to fake,
You laugh with me, shout, scream, now tell me you're staying.
I know I know I know, you're still my love.
The same as I love you, you'll always love me too.
This love isn't good unless it's me and you.

Box after box and you're still by my side.
The weather is changing and breaking my stride.
I know I know I know, it's just this day.
House after house, just like car after car,
You see club after club, and it all seems so far.
I know I know I know, what else are we here for?
The same as I love you, you'll always love me too.
This love isn't good unless it's me and you.

Stick your hands inside of my pockets,
Keep them warm while I'm still here.
Tell them this love hasn't changed me, hasn't changed me at all.

Last night I was writing about you,
I know my screaming and shouting won't keep you.
I know I know I know, you're still my love.
I wake up to the sound of you working,
In one room right over, you're stressing and loving me.
I know I know I know, be still my love.
The same as I love you, you'll always love me too.
This love isn't good unless it's me and you.

Stick your hands inside of my pockets,
Keep them warm while I'm still here.
Tell them this love hasn't changed me, hasn't changed me at all.
Stick your heart inside of my chest,
Keep it warm here while we rest.
Tell them this love hasn't changed me, hasn't changed me at all.

The same as I love you, you'll always love me too.
This love isn't good unless it's me and you.
The same as I love you, you'll always love me too.
This love isn't good unless it's me and you.

Truer words have never been spoken -

But what am I learning by this constant pain?

The only thing I can think of is compassion for others, and distinguishing when someone is taking their station in life for granted. What's it worth? I guess I'm a better person for it.

how often DSHS doesn't call me back? I leave message upon message and receieve no call back.

Same with my doctors. I called and left a voicemail saying I've been experiencing new symptoms adn to call me. At like 9 am. It's 15 to 5pm, and nothing. Argh!

edit: i said over the age of fifty because i doubt anybody that age would want to wear dora the explorer bandaids or do any of the other suggestions i'm planning on writing about. i changed the description to be more appropriate. sorry for offending you. and just to be clear: i'm not one of those people who acts like all people over a certain age are from outerspace. ;)

A lot of these are directly taken from this wonderful list, which is actually an excerpt from a book with 505 ways. This list was really great, however I found that a lot of the list didn't apply to me. I am only 23, and I'm an Athiest. Religion isn't a part of my life, and it isn't a part of my illness. I know there have to be other people who are in my position, so I thought I'd post the parts of the list that applied to me and add some of my own suggestions. Anybody else want to add? Comment & I'll edit my post, with credit given.(my additions are, as usual, in red.)

x. Ask, "What events in your life are changing and how are you coping with the changes?" (Be casual but interested.)

x. buy them the best sunscreen money can buy, and decorated bandaids.

x. Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.

x. Put meals in disposable containers and attach a note saying "This doesn't need to be returned." (This is a really good one. I love home cooked meals, soul food, anything fatty and leftover deliciousness. I love to cook, but never have the energy to anymore. I live off of frozen and canned foods, and once a week I get to eat at Sean's parents. Anything to get me away from a tv dinner is awesome.)

x. always be willing to hang out at their place. sometimes it's nice to have company, but you don't want to go out.

x. give them a houseplant.

x. Add stickers to envelopes for a cheerful touch.

x. Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope.

x. Wash their car and put a little note inside for them to find later.

x. Remember important anniversaries, both the good and the bad. Others rarely do.

x. Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours."

x. "No matter how little you have, you can always give some of it away." Just listen.. until it hurts to not say anything. And then listen some more.

x. Ask, "What do you wish people understood about your illness?"

x. Don't make her feel guilty about things that she cannot do.This is a big one with me. Don't walk on eggshells, but be understanding if I cancel at last minute or can't make it to special events. I want to be there as much as you'd like me to be, but I have to sacrifice social time all the time.)

x. Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).(This is an AMAZING suggestion. With the internet, this is such a great and easy gift to give.)

x. Mop the floors.

x. Buy a brightly colored umbrella as a gift.

x. Ask, "Do you have an errand I can run for you before coming over?"

x. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day.(Another excellent suggestion.

x. For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes."

x. Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.

x. Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude.

x. Say, "While you're in the hospital I'd be happy to take care of your pet."

x. Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest).

x. Ask, "What are your top three indulgences?" and then spoil her soon.

x. Hold the door open for her. They are heavy!

x. Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit.

x. Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime."

x. Don't ask her, "How are you able to make it financially?" If she wants to share a burden she will.

x. Ask, "What would you advise me to look for in a new doctor?"

x. If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther.

x. Accept that her chronic illness may not go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it.

x. Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission.

x. Ask her to share her testimony at an event.

x. Buy a magazine subscription for her on her favorite topic.

x. Understand that you don't need to know all of the details about the illness in order to be helpful.

x. Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.

x. Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you."

x. Don't insist on talking about what is going on healthwise. Even if you are interested, people with anxiety problems sometimes want to escape and not have to think about every little detail. We thank you for your concern, but we need a breather sometimes. Cheer them up!

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 questionairre 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.

I just discovered that the giant beautiful purple / red tree in our front yard is a plum tree! that is so awesome! i really want some fruit in the backyard

I just recieved an email from Congresswoman McMorris office.

Somebody wants to talk to me from the office about the issue I raised.

Hopefully it was the one about disability and not the one about Ron Paul's bill I was urging her to  look at.

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.

So I finally got around to taking a photo of my hardcore rash, caused by FLUORESCENT lights.

I had to sit in the doctor's office for two hours under fluorescent lights without any sort of protection. I didn't apply my sunscreen, because I'm a lazy jackass, and I don't have a wide brimmed hat yet. No before photo, but I guarantee my face didn't look like THIS before.

This is the original photo - which doesn't really show the rash very well, due to the bright lights in the bathroom AND the camera flash.

( undoctored photo )

and this is the version where I just magnified the reds in the photo, to make the rash easier to see.

( doctored photo )

the rash on my face is called Acute Cutaneous Lupus Erythematosus.

but i also get Chronic Cutaneous Lupus Erythematosus all over my legs and my ears sometimes. (i'm working up the courage to post a photo of my legs. they are torn to bits.)