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Thread: Help For My Graduation Project Please :)

  1. #11
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    Default Gradtuation project

    1.Bonita (Bonnie) Camasta 2.i am 60 3.i was diagnosed at age 58 .4.i do not have as much energy as i used to and each day has its own problems 5. i was started out on prednisone different amounts then imuran 6. i now take 7 mg of prednisone 150mg of imuran and 100mg of plaquenil 8. i don't think my friends give it much thought 8. i do not think my family thinks that this is as serious as it is because there is no visible signs to really see and besides that you are still mom and grandma 9. my symptoms vary from day to day low grade fevers joint and muscle pains headaches fatigue dizzy because of anemia bladder infections and some others 11. i ususlly see the rhumetologist every 6 weeks but latly because of problems and many blood tests it has been sooner 12. i have to see my family doctor also every 6 weeks and a gastroenterologist every 6 months 13. lupus presents its own problems every day 14. sometimes it gets to you mentally when you are really hurting or not feeling good 15. it really does not keep me from doing what i want to do it is just it changes how you do it Love and Prayers Bonita

  2. #12
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    Default Here goes Ashley...

    1-What's your name? Lori
    2-How old are you currently? 45
    3-How old were you when you were diagnosed? 18
    4-How has your life changed since diagnosed? I had to give up a scholarship and drop out of college. I've adjusted my plans, goals, dreams to live my life with as much happiness and fulfillment as possible. I married the man of my dreams and have 2 children that bring me joy every single day. I have spent more time in doctor offices and hospitals than I ever thought possible for one human being.
    5-What meds did you start on? Prednisone, Imuran, Atenolol
    6-What meds are you currently taking? Prednisone, Lisinopril, Amitriptyline, Fosamax
    7-Do friends treat you differently knowing that you have Lupus? Not the ones that matter.
    8-Do family members treat you differently? Only in that they are understanding and supportive of my health situation.
    9-What symptoms made you think something was wrong? Joint pains in fingers and wrists, swelling and inflamation in fingers, flu-like symptoms...fever, sorethroat, headache, aches, extreme fatigue.
    10-How long did it take for you to be fully diagnosed? 1 week
    11-How often do you visit the doctor? Every 6 months to a year
    12-What specific doctors do you visit? Immunologist, Primary Care, ENT, Orthopedist, Vocal Cord Specialist
    13-Has Lupus affected you at all financially? Most definitely. Because of medical bills, my credit has been ruined. It has caused extreme hardship on our living situation at times. The only way we rose above it, was to put my husband through college and for me to go on Social Security Disability.
    14-What about mentally? There's no question it has affected me mentally. I have spent time in therapy for anger issues and self esteem and confidence issues. I've spent times in severe depression. If you're an intelligent, thinking person, it's going to affect you mentally, big time.
    15-Has Lupus stopped you from doing what you wanted/want to do in life? It forced me to change my plans for college, and it has forced me to adjust my life to accommodate my physical limitations. It has caused me to adjust want I wanted to do in life (for example downhill skiing), to what I am able to do.

    Good luck on your project, Ashley. I wish you only the best in your future ahead!

    Lori
    Last edited by Rastagirl; 05-01-2009 at 11:13 PM. Reason: Brain Fog

  3. #13
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    Hi Ashley, this is a great project idea. Here's my answers-

    Quote Originally Posted by ashleybaby715 View Post

    1- Whats your name?
    Robert V.

    2-How old are you currently?
    41

    3-How old were you when you were diagnosed?
    36

    4-How has your life changed since diagnosed?
    Every aspect of my life changed drastically. I'll go into detail when I get to question #15.

    5-What meds did you start on?
    Plaquenil 200mg twice a day, oral prednisone, naproxen.

    6-What meds are you currently taking?
    Plaquenil 200mg twice a day, naproxen, prevacid, methylprednisolinone IV infusion for problems related to overlapping MS.

    7-Do friends treat you differently knowing that you have Lupus?
    I only have one friend who I'm still in contact with who knew me before the SLE diagnosis. People stopped calling, coming around, as I could no longer "give" them what they wanted. It's one hell of a way to learn that most people you considered friends were only in it for what I could do for them, or give to them.

    8-Do family members treat you differently?
    Yes, at first I had no support, and basically gave up on my family. I got tired of being called lazy, a hypochondriac etc. My family and I mended fences, and now we are very close. They are as supportive and as understanding as they know how to be. They really make an honest effort to be as supportive as possible. I'm very lucky to have them in my life.

    9-What symptoms made you think something was wrong?
    I had two big patches of hair fall out on the back of my head. I had a rash under my arms, terrible fatigue, memory and cognitive problems, and bad joint pain.

    10-How long did it take for you to be fully diagnosed?
    About ten months, fast compared to many.

    11-How often do you visit the doctor?
    About every ten days.

    12-What specific doctors do you visit?
    I am "between" rheumotologists, I'm on a waiting list for a new rheumo/lupus specialist moving to my area. Hope she works out. I see my G.P., and my Neurologist about every ten days. I see an opthamologist about once a month.

    13-Has Lupus affected you at all financially?
    Yes. I was a successful business owner. Had around twenty employees and multiple contracts with the Dept. of Defense as well as multiple jobs with various federal and state law enforcement agencies. I also did firearms related work for two major movie studios. I also owned multiple patents. I had to quit, and sell the business. I went on full Social Security Disability which I am still on today. Needless to say. I had a respectable income while I was working which I no longer have.

    14-What about mentally?
    Yes, it's affected me in many ways. Brain fog has caused me to lose much of my technical education. Poof, alot of stuff in my head was suddenly gone, or locked in some corner of my mind that can't be accessed on most days. Much of my ability in public speaking, and writing, is gone. Self confidence took a major hit, and I went from being a very public, and social person, to being a recluse.

    15-Has Lupus stopped you from doing what you wanted/want to do in life?
    Yes, and no. Yes, my original plan for life was totally destroyed. Career, fiancee, all my grand plans came to an end. I lost all hope and nearly succeeded in a suicide attempt not long after my SLE diagnosis. To say that event changed my life, would be a gross understatement. Had I succeeded, I would have missed out on so many great things, and I would never have met the new friends I am so lucky to now have. My near death experience gave me a totally new perspective on life, lupus, and what it means to have a good life. In my new normal, I've learned my limitatons, and also discovered new talents that are not limitied by the effects of lupus. I live in a place that is perfect for me. I have hobbies I love. I have supportive family who live just a short drive away. I have my cats, and I have new friends. So yes, lupus stopped me from doing many things, but it also opened up new doors I may never have opened before. Just because I could no longer follow the original path I had so carefully laid out for my life, it DID NOT mean there were no good alternatives. All I want to do now, is enjoy the simple things in life, and on most days, that's exactly what I do.
    Looks like you have plenty of people and anwers for your project. Hope you get an A+!

    Rob
    Last edited by rob; 05-02-2009 at 03:58 AM.

  4. #14
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    1- Whats your name?
    Tasha

    2-How old are you currently?
    23

    3-How old were you when you were diagnosed?
    23

    4-How has your life changed since diagnosed?
    it hasn't changed much really.

    5-What meds did you start on?
    prednisone first, then plaquenil, cellcept, lisinopril, and lipitor.

    6-What meds are you currently taking?
    all the same.

    7-Do friends treat you differently knowing that you have Lupus?
    they ask me how i'm feeling more frequently, lol. other than that, no.

    8-Do family members treat you differently?
    no.

    9-What symptoms made you think something was wrong?
    joint pain/swelling in my hands, feet, elbows, and knees.

    10-How long did it take for you to be fully diagnosed?
    about 2 months.

    11-How often do you visit the doctor?
    rheumatologist- once a month. nephrologist- approx. every 3 months.

    12-What specific doctors do you visit?
    rheumatologist and nephrologist

    13-Has Lupus affected you at all financially?
    no. my parents pay for everything because i am a grad student. i am so thankful for that.

    14-What about mentally?
    yes. i find that i am depressed more frequently.

    15-Has Lupus stopped you from doing what you wanted/want to do in life?
    nope.

    good luck on your project!!!
    23 year old clinical psychology grad student with lupus (SLE) and nephritis
    Medications: CellCept, Plaquenil, Prednisone, Lisinopril, Lipitor, OsCal+D

  5. #15
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    omg, i just wanted to say thanks to everybody who did the survey! theres so many answers from everybody. its absolutely perfect! i'll definetly have alot of examples for my panel!
    I'm Not Crazy, I'm Just A Little Lupie!

  6. #16
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    hi ashley,

    glad you got so many responses....hope it helps, and let us know what you do with the information, and how everything works out.

    You obviously think outside of the box, so keep up the good work.
    Phyllis

    share a smile today

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