First Name
Age Group
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?
Every Month
Are you presently employed? If yes, what is your occupation?
Were you employed previously? If yes, when and where?
I worked \'til 2001 as a, though I was already having health problems that caused me to leave several jobs. I did technical writing and software quality analysis in internet and telecom industry firms.
What conditions have you been diagnosed with? When? Where?
I\'m not sure what you mean by where I was diagnosed. By various doctors who have treated me, who I\'m not willing to name in a public interview or document. 1988 - Chronic major depression 1991 - Post-traumatic stress disorder, anxiety disorder, obsessive-compulsive disorder 1993 - Chronic fatigue syndrome and fibromyalgia, osteoarthritis, migraines 2004 - spondyloarthropathy, rheumatoid arthritis I realize that some of those aren\'t neurological, but they contribute to severe, constant pain. I take morphine daily just to achieve a some minimal level of pain reliev.
Have you ever been hospitalized? If yes, how many times? When was the last time that you were hospitalized?
Yes, twice, for severe depressive episodes and once for childbirth. The last time was in 1991.
Please describe everything you know about your condition(s) and how you obtained such information?
I can't even begin to enter everything I know about every one of my conditions. I'd be here for weeks! Other than listening to various health professionals, I've done extensive personal research online and offline. I have an excellent understanding of medical terminology, (I have done medical transcription and medical claims processing professionally in the past), and I have gained a good layman's understanding of anatomy. My psychological issues are understandable, as I grew up in a home with an alcoholic, sometimes violent parent, and was sexually abused by someone outside our household. As alcoholism is seen on repeatedly on in both my maternal and paternal family trees, it is likely that there is a genetic predisposition to alcoholism, which is statistically more likely to be expressed as depression in females. Arthritis is another inherited weakness, and it's difficult to find anyone in my paternal line who doesn't have it at a fairly early age. I suspect that enthesopathy isn't unusual, but most of my extended family doesn't have access to the same level of medical care that I had at one time, nor are they very well educated. I actually forgot to list that I have polycystic ovarian syndrome, and was diagnosed with it in my mid-teens. I've never had a "normal" menstrual cycle, but I'm "normal" for my maternal line. My hormones are demonstrably "messed up," but I believe the problem goes much further than just the PCOS indicates. I am also hypothyroid, and I believe the chronic fatigue syndrome and fibromyalgia, as well as some of the depression, are actually related to a larger system dysfunction of the adrenal system. I've not been able to see an endocrinologist to have thorough testing in order to investigate that theory, though, and as I do not currently have health insurance, I don't know when I'll be able to follow that line of thought. For now, I'm left with the reasoning that I, like my daughter after me, inherited a predisposition to chronic pain and fatigue. Living through too many years of extreme stress resulted in "flipping the switch," so to speak, so I have fibromyalgia and migraines, as she does. My trigger was childhood abuse and a series of abusive marriages. Hers was her father's slow death from leukemia.
Please illustrate your life before, during, and after learning of your condition(s) and engaging in therapies, if any?
Before illness, I was an overachiever. I worked 50-60 hours a week during my first marriage, took a full load of college courses while maintaining a 4.0 GPA, had an active social life, was heavily involved at church, where my husband was a youth minister, and handmade gifts for everyone in both of our large extended families. After I got sick, but didn't know what was wrong, I kept trying to do what was "normal" for me, and failing. I lost my job. I dropped out of school. I got divorced and lost most of my social connections. I left the church. I even stopped doing crafts. I ended up living with my parents and doing telemarketing part time at night, and was still exhausted all the time. Finally, I couldn't even do that any more. The depression was especially bad then, but my family doesn't believe in disability unless you've loss limbs or something like that. I got into a very abusive relationship with someone who wanted a woman he could control completely. Fortunately, I met someone else who had CFS through him, and saw her doctor, who diagnosed me correctly. Leaving that relationship helped a great deal. It took quite a while to rebuild anything, but I did finally get back on my feet. I got much better for a while, and tried to convince myself that I was "cured." That didn't really work well. I kept overworking, going into a flare, losing a job, recovering, and getting another one. It took longer to recover every time. Finally, after I was in a relationship with a truly marvelous man (my life partner), he convinced me that living that way wouldn't work, so I admitted to myself that my body couldn't handle that any more. I tried working part-time, and crashed anyway. I tried working from home - nope, my body can't do that, either. So finally, I'm grudgingly giving my body time to heal, and trying to get disability benefits to keep body and soul together while it happens.
Please describe how you cope with your condition(s), if at all, and the effectiveness of each strategy?
I have medication to give me some cushion from the pain. It isn't possible to make it go away completely. It's something I accept as part of being alive, now. I've developed all kinds of strategies to deal with the cognitive deficits, memory tricks, using lists, getting a GPS unit for the car, etc. - but it's still very difficult to go from being "gifted" to being "average" at best, as conceited as that must sound. On bad days, I feel like my brain has gone from being a top-of-the-line computer to an Etch-a-Sketch toy. I have to budget my energy constantly. That's a real battle. I can't just load the dishwasher before I run out the door, because that energy use might be the difference in whether or not I can stay awake long enough to drive myself home safely or not. That has been very, very difficult to deal with. I'm very particular about my home, and I am the one who normally keeps everything just so. I hate having to let things go! But I do have to make those choices, and they're difficult. Choosing to have fun sometimes, instead of doing my "must dos," has been another hard lesson - but if I don't have fun, I get really, really hard to live with.
Does the state of your health impede in any way your everyday activities such as work, housework, studies and so on?
Oh yes! When we could afford it, we had someone clean the house, which was a huge help and well worth the money. Now, it just doesn't get done as much as it should. I can't work, period. I'm not attending school right now. We've stopped trying to have another child, or even talking about adopting or fostering more children, because I know I can't actually take care of a baby. This broken body has taken all of that away from me.
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?
Certainly. I'm not willing to have people over because the house doesn't meet my standards. I'm too tired to go out, most of the time. Many of our former social circle have dropped away because I'm so often unable to go out, and my partner won't go without me - they thought we weren't interested when it really is that I cannot go. We're very isolated now. I've even lost most of my family relationships because of my health.
How would you classify your daily interactions with people in general? (Comfortable, neutral, awkward, unpleasant) Please describe in detail.
My interactions are limited now. Very limited, and mostly online. When they're offline, people seldom know that I'm disabled - they're usually with strangers, unless it's someone at a medical office.
How do you envision your future?
It's hard to see much but more of the same, but I have to imagine more, or I won't be able to go on. So I dream of finding The Thing, or the Combination Of Things, that help me to get much better. Of having friends who understand and are willing to come around and put up with my erratic scheduling. Of being able to afford household help, so that we can entertain regularly, which would make a big difference. Of being well enough to go back to school.
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.
Strongly Agree
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.
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:
Almost always tense
Almost always uncomfortable
Almost always in agony
Often distraught
Often discouraged
Often unsure
Equally capable and helpless
Often certain
My relationships help me feel I am:
Often valued
Often comforted
Often close
Often connected
Often included
Often supported
Often accepted
Towards those who are emotionally close to me, I feel I am:
Often forgiving
Often welcoming
Often accepting
Often encouraging
Often trusting
Often understanding
Often respectful
Universal beliefs and principles or a divine presence help me feel I am:
Equally inspired and uninspired
Often troubled
Almost always judged
Often aimless
More often rejected
Almost always out-of-step
Often adrift
Towards universal beliefs and principles or a divine presence I feel I am:
Often ignoring
Often receptive
Often thankful
Often accepting
Often approaching
Often willing
Often connecting