First Name
Age Group
Roselle Park
New Jersey
Zip Code
Marital Status
How many people share the living space with you?
What is your highest level of formal education?
Bachelor Degree
What race/ethnicity do you belong to?
What is the frequency of your visits to the health care provider?
Are you presently employed? If yes, what is your occupation?
No, I am unemployed because my employers keep violating the Americans with Disabilities Act. I have been unofficially offered a new job to starte in the fall, and the EEOC is investigation my old job
Were you employed previously? If yes, when and where?
Yes, special education and developmental disabilities/social service fields-public schools, early intervention program,-various NJ locations
What conditions have you been diagnosed with? When? Where?
Chronic Pain/Chronic Fatigue Syndrome/Fibromyalgia-April 2000 Obsesive Compulsive Disorder- about 10-12 years ago suspect Dysautonomia Brain Injury-June 15, 2002-suspect post concussion syndrome Carpal Tunnel Syndrome-1999 Hypersomnia-2000 medication withdrawal seizure June 15, 2002 significant other of person with cerebral palsy (3 1/2 years) teacher/care taker of children/adults with multiple disabilities (14 years) Where-various NJ locataions
Have you ever been hospitalized? If yes, how many times? When was the last time that you were hospitalized?
Only Emergency Room treatment. I cannot find a doctor who truly understands my primary condition-Fibromyalgia-no matter how sick I am they say I\'m fine and I should stay active (at one point I actually had Mono that was missed for 3 months and another time I couldn\'t walk or see straight from the head injury-an ER doc insisted that I had to get up and walk even though I was not able to because I had stiffened so severely from the Fibromyalgia and had been using a walker even before I got stiff-So I have never been hospitalized, but I wouldn\'t have been if I could get a doctor to listen.
Please describe everything you know about your condition(s) and how you obtained such information?
I seem to know more than the doctors. I have a few dozen books, research on the internet, and network with others with my conditions through online groups. I believe that Fibromyalgia is a Neurological Condition. When I had the seizure, it seemed to reset my brain-the symptoms were greatly reduced and have been slowly coming back ever since. Before the seizure, the exhaustion and pain were unbearable and I could not walk unaided-i used knee braces daily and a walker or other supports (the back of my boyfriends wheelchair, shopping carts, etc.) routinely. I strongly believe that Electo Convulsive Therapy and the implantable electrical brain stimulator that is being investigated for depression are the most promising treatments. another posssible treatment is Hyberbaric oxygen therapy-None of these are being researched for Fibromyalgia as far as my knowledge although I have heard that the theory has come up before. Instead, researchers are wasting time and money of treatments that only have a minimal effect. The Oxygen therapy is available, but is time consuming (difficult for an employed person) and expensive-about $4000 and not covered by insurance because it has not been researched-although my insurance is more than willing to pay for treatments taht do not work.
Please illustrate your life before, during, and after learning of your condition(s) and engaging in therapies, if any?
My symptoms started when I was 5-I was never able to physically keep up with my peers-the fatigue became bad the first time I had Mono at 19, the pain that had been bearable for the most of the time became unbearable in September 1999 after I bruised my hip. Before I got really sick at 19, I was on track to graduate from college a semester early, I held as many as 4 part time jobs while a full time student earning mostly As and Bs and volunteering as an EMT. I ended up graduating a year and a half late (not being able to earn a full time professional salary during that period). I've been in and out of work on disability as complications arose-suffering financial hardship. Since 1997, I have tried drug and therapy treatments including homeopathic for the OCD, but have only had minimal relief. Since 2000, I have tried a laundry list of treatment for Fibromyalgia/CFIDS/Chronic Pain-including medications, physical therapy, psychotherapy, electrical stimulation to painful areas (not nervous system), and alternative therapies including acupunture. Non on the medically recommended treatments have helped-some have caused harm. I am on the verge of Exhaustion everyday-no matter how much I sleep. Right now the pain is bearable most of the time, but it is getting harder to walk. Not even Narcotics helps with the pain when it gets bad-ice packs are helping for now(doctors tell me to use heat, but it could get to the point that they dtop working. I found wrist braces that help the Carpal Tunnel. At the worst point I lost feeling in both hands. I pay out of pocket for the wrist braces as well as the knee braces, because the doctors don't listen. When I tell them the brace helps-or I need something to keep my knee straight-they give me another precription for narcotics which I tell them don't work and they tell me to take them day and night even when the pain is only a problem at night and ignore me when I ask them to explain. One drug, Zanaflex, caused by BP to drop to 60/40 and pulse to 40. This happened for months the doc told me it would help me sleep-I was actually passing out-even though my vitals stayed low throughout the day, the docs never noticed there was a problem. Another drug caused me to gain 30 pounds-aggravating the pain-I was never warned about these side effects nor were they listed on the phamacy print out nor were there monitored by the docs. I found the possible post concussion syndrome is aggravated by sunlight and incandescant light-I wear anti glare glasses, stay out of the sun, and keep my indoor lighting low (even though eye doctors preach that I should use bright light by the computer and when reading) I don't read much anymore-The associate cognitive problems make it difficult for me to follow a story. When I was in high school I was asked to join the Forensic team, now I have difficulty verbally expressing my self. I have found the doctors that claim they specifically treat Fibromyalgia know the least about it-I told one that I was in so much pain I wanted to amputate my legs-his response was that the condition isn't so bad. Another would change the subject every time I mentioned Fibromyalgia. At one point my chief complaint was knee pain-after 8 months and many visits to the doc his respinse was that he didn't know my knees hurt.
Please describe how you cope with your condition(s), if at all, and the effectiveness of each strategy?
Ice packs are helping the pain for now, knee braces and wrist braces as needed, motorized wheelchair for trips to malls, boardwalks, walker or manual wheelchair (used for support/pushed/used to sit when needed/carry items-it hurts too much to use my arms) for moderate activities-independently mobile for short/varied activities-I have had to pay for all these assistive devices out of pocket (purchased motorized chair used) since I cannot find a doc to work with me melatonin to help me fall asleep-sleep quality is non restorative-difficult to wake even after 10 or more hours sleep-stimulants don't help fatigue-just make me fell tired and jittery-can't use sedatives due to seizure causeb by overprescription in the past (10months worth) ludens citrus flavor cough drop help with nausea caused by post nasal drip that is worsened by the fatigue-the docs keep giving me allergy meds which don't help
Does the state of your health impede in any way your everyday activities such as work, housework, studies and so on?
I worked for an agency that services people with disabilities, yet they discriminated against me in their employment practices. The essential functions of the job are self accommodating: flexible hours and locations. I asked for an exemption from a mandatory out of state meeting about company benefits because the time and location were not doable because of my health issues and I asked tobe able to defend myself in writing whenever I needed to defend myself (which became often when one of the intermediate supervisors found out about my disabilty-she claimed a lot of things I did were wrong even though the agency that oversees my type of employment agreed with me). This is because it is difficult for me to express myself verbally, especially when under stress, on issues that are not clear cut. Even with word processing I need to move around my statement and insert ideas where they make sense and even go back and complete then later. They ignored me-I caught them lying in writing and on tape and sent the complaint to the EEOC. At my previous job in the public schools, the principal refused to accommodate the severe arthritis in my foot (caused by an untreated fracture) by allowing me to wear plain sneakers (even though there was no dress code against it-it was the principal's personal policy that teachers must wear dress shoes)until I went to the superintendent-and then the principal threathened me. Even with the ADA employment is difficult-I have to spend more time fighting than working. Once I have a job with an employer that cares about federal law I still struggle to work. I have communicated with other people with my condition-few of whom are as sick as me and they get disability. Disability will only give me enough money to exixt, I want to live. As far as housework goes-I gave up on using dishes, pots and pans-everything is disposable-from forks to plates to aluminum foil-taking out the newspapers is extraordinarily difficult-I have to wait for a day I am physically able to carry them down the flight of stairs (I live in a second floor condo, but hope to buy a ranch house as soon as I find an ethical employer and get out of the debt the previous employer put me in). Spending 10 minutes picking up items and putting them away tires me out. I don't dust, vacuum, and mop nearly as much as I would like. I have been trying to start working onmy masters degree for 8 years, but an not able to-I will need time extensions and online courses-as I mentioned earlier- got my undergrad a year and half late becaue of my illness(I asked my college for accommodations also, but they refused to even consider it)
Does the state of your health impede in any way your social activities, such as inviting others to your residence, accepting invitations, going out with friends and so on?
I never know when I will be able to engage in Social Activities. Most people make plans ahead of time-I can't-when I can't make plans-friends lose interest. When I try to make plans at the last minute-nobody is available. I can't do many of the activities they do-because they involve travel of more than an hour (which is painful for me) and late nights (which I am too tired to do)
How would you classify your daily interactions with people in general? (Comfortable, neutral, awkward, unpleasant) Please describe in detail.
Daily interactions are neutral-I don't interact withtoo many people-most I am able to hide the severity of my health problems from.
How do you envision your future?
If the docs and researchers will listen-hopeful there will be a realistic treatment-hopefully I will be able to afford a wheelchair accessible house before I need to use assistive devices full time (the man I am marrying already uses a chair full time so even if there is a treatment for me we will still need the accessible house)
On the whole, I am satisfied with myself.
At times I think I am no good at all.
I feel that I have a number of good qualities.
I am able to do things as well as most other people.
I feel I do not have much to be proud of.
I certainly feel useless at times.
I feel that I'm a person of worth, at least on an equal plane with others.
Strongly Agree
I wish I could have more respect for myself.
All in all, I am inclined to feel that I am a failure.
I take a positive attitude toward myself.
I can always manage to solve difficult problems if I try hard enough.
If someone opposes me, I can find the ways and means to get what I want.
I am certain that I can accomplish my goals.
I am confident that I could deal efficiently with unexpected events.
Thanks to my resourcefulness, I can handle unforeseen situations.
I can solve most problems if I invest the necessary effort.
I can remain calm when facing difficulties because I can rely on my coping abilities.
When I am confronted with a problem, I can find several solutions.
If I am in trouble, I can think of a good solution.
I can handle whatever comes my way.
With my illness experience, I feel I am:
Often tense
More often uncomfortable
More often in agony
Often composed
Often optimistic
Often confident
Often capable
More often certain
My relationships help me feel I am:
Often valued
Often comforted
More often close
More often connected
Often included
Often supported
Often accepted
Towards those who are emotionally close to me, I feel I am:
More often forgiving
More often welcoming
More often accepting
More often encouraging
More often trusting
More often understanding
More often respectful
Universal beliefs and principles or a divine presence help me feel I am:
Almost always uninspired
Towards universal beliefs and principles or a divine presence I feel I am: