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
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."
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
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!
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.
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.
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!
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/2007/0
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
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
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!
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
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
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.
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?
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
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
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...
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
(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
"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."
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