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?
High School
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?
Yes, from 1995-2001 doing various things, mainly clerical work.
What conditions have you been diagnosed with? When? Where?
Mitochondrial encephalomyopathy causing a seizure disorder, ministrokes (stroke like episodes), migraines, neuropathy, dysautonomia, GI dysmotility, neurogenic bladder, heart, lung, endocrine and other organ issues as well as myopathy and secondary fibromyalgia, also have OCD, social anxiety, situational depression, sensory intergration disorder, mixed connective tissue disease and things related to that. Have gotten most of these diagnosises over the past 10 yrs.
Have you ever been hospitalized? If yes, how many times? When was the last time that you were hospitalized?
multiple times, too many to count, last time was in November of last yr.
Please describe everything you know about your condition(s) and how you obtained such information?
I have learned alot about the mitochondrial encephalomyopathy and the secondary diagnosises that have been caused by it. I know that is it due to the complexes in the mitochondria not working the way they should thus leading to the energy in the body to be depleted. I have learned alot more about it too and also the autoimmune disorders I have, but to say everything I know about these conditions, that would take a book. I have done alot of research on all the conditions- online, I have also learned from other patients, doctors, and by going to conferences.
Please illustrate your life before, during, and after learning of your condition(s) and engaging in therapies, if any?
Before my condition I was your average teenager, I did have some issues even then with anxiety/depression and mild physical symptoms, but I was able to carry out a pretty normal life. As my symptoms became more severe, even before my diagnosises, I started having more and more problems doing what I used to. I slowly had to give up jobs, give up college, see friends give up, stop driving and so on. As I got diagnosises, it helped me to know I wasnt just a "mental case". I have learned to cope with it alot more and have learned to find positives with it.
Please describe how you cope with your condition(s), if at all, and the effectiveness of each strategy?
I have learned to cope with it pretty well. As I said above, I have learned to gain positives out of it. I've done that by seeing that I am more accepting of different people and more understanding of peoples problems. I have also gained alot of friends with the same and similar illnesses and this has greatly helped with my coping. I still do get depressed and anxious but not to the excess that I used to.
Does the state of your health impede in any way your everyday activities such as work, housework, studies and so on?
Yes, it has totally affected this. I had to stop working and go onto SSI and stop going to college. I also have had problems doing the housework and other things that require physical activity.
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?
Yes, I used to go out several times a week when I was more healthy, now I'm lucky to go out once or twice a month. I usually don't have others over because I'm in too much pain, too fatigued, too anxious or otherwise not feeling well. I do sometimes make acceptions for special occasions and go to them even when I'm not feeling well.
How would you classify your daily interactions with people in general? (Comfortable, neutral, awkward, unpleasant) Please describe in detail.
This totally depends on who I am with or talking to. As long as I know them well, I'm comfortable. But if I am interacting with people I don't know so well or don't know at all, it is between awkard and unpleasant. I don't generally interact daily with people other than on the phone or with my family in person. Also, I see numerous doctors and do have to go to alot of appts, sometimes several a wk. When this happens, it just depends on how I'm feeling physically and emotionally.
How do you envision your future?
I have definitely learned that you can only live day by day with a disease like mine, but I do have hopes that someday there is more treatment for the symptoms and possibly a cure. I also hope to gain more independence in the future and possibly go back to school. I really desire going into the medical field with all that has happened to me it has made me wish to persue this. I also want to someday share my experiences with others somehow, either by writing them or speaking.
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 Disagree
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.
Strongly Disagree
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:
Equally relaxed and tense
Equally comfortable and uncomfortable
Often in agony
Often composed
More often optimistic
Often confident
Equally capable and helpless
More often certain
My relationships help me feel I am:
Equally valued and worthless
Equally comforted and distressed
Equally close and distant
Equally connected and isolated
Equally included and excluded
Often supported
Equally accepted and criticized
Towards those who are emotionally close to me, I feel I am:
Almost always forgiving
Almost always welcoming
Almost always accepting
Almost always encouraging
Often trusting
Almost always understanding
Almost always respectful
Universal beliefs and principles or a divine presence help me feel I am:
More often inspired
More often comforted
More often accepted
More often guided
More often embraced
Often in harmony
Often sustained
Towards universal beliefs and principles or a divine presence I feel I am:
Almost always listening
Almost always receptive
More often thankful
Almost always accepting
More often approaching
More often willing
More often connecting