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ashleybaby715
04-30-2009, 01:53 PM
ok for my graduation project, we have to do an interview of someone that relates to our projects. i'm doing my project on Lupus.
and i was wondering if anybody would be willing to answer a few questions for me...it would help me out alot...!
instead of just ONE person, i'm using multiple people, which should also help me out lol.
so here are the questions- and if you could send the answers in a private message to me, or if you want you can reply to the thread, whatever works for you!
thanks in advance!
Ashley<3

1- Whats your name?
2-How old are you currently?
3-How old were you when you were diagnosed?
4-How has your life changed since diagnosed?
5-What meds did you start on?
6-What meds are you currently taking?
7-Do friends treat you differently knowing that you have Lupus?
8-Do family members treat you differently?
9-What symptoms made you think something was wrong?
10-How long did it take for you to be fully diagnosed?
11-How often do you visit the doctor?
12-What specific doctors do you visit?
13-Has Lupus affected you at all financially?
14-What about mentally?
15-Has Lupus stopped you from doing what you wanted/want to do in life?

THANK YOU GUYS SOOOO much!!!

magistramarla
04-30-2009, 02:29 PM
Ashley,
I happen to be home, recovering from oral surgery, so here goes:
1. Marla S. Dean
2. 51 yrs. old
3. 51 yrs. old
4. I can't do all of the things that I used to do with as much energy as I once did. I have to slow down and rest more often. I'm about to quit teaching and I plan to just do some subbing and/or tutoring as I feel capable.
5. a NSAID
6. I'm on Plaquenil, a NSAID and I'll be starting on Methotrexate soon.
7. Yes, my co-workers seem a bit put-off by the fact that I just don't participate at the school the way I used to.
8. My husband seems to worry about me more. Our adult children all seem to still expect Mom to be the same and still expect me to be able to do things for them.
9. A rash on my neck and face, strange sores on other parts of my body, extreme fatigue, extreme joint pain.
10. Two years
11. Lately, about once per six weeks
12. PCP, a Rheumatologist, an ENT (spasmodic dysphonia), an Orthopedic Surgeon (osteonecrosis)
13. I'm about to quit teaching, but I would have been doing so anyway, since my husband has military orders to move to another state.
14. Mentally, I've noticed that my mind isn't as quick as it used to be (could be my age, too) It does upset me that I can't move around the way that I used to, but I'm basically a positive person, so I just go ahead and do it, albeit a bit slowly. (We love to travel, and I've even traveled to NYC, Honolulu and Japan in rented wheelchairs). This disease WILL NOT keep this old girl down.
15. NO (see #14) I've been a military wife, raised 5 kids, been a La Leche League Leader, a midwife's assistant, a semi-professional singer, and a Latin teacher. We're about to start a new phase of our lives in Monterey, Cal. The AF is sending my hubby for a PHD at the Naval Post Graduate School. I may move a bit slowly, but I intend to get re-involved in the Officers' Wives' Club, take some long, slow walks on the beach and I plan to take a class in Italian while I'm there, so I'll be ready when we finally get to Rome! I also hope to get the two grandsons out there to spend some time with me.

I hope that this helps you with your project. My students can tell you; I'm too stubborn to let anything stop me from doing what I want to do!
Marla

Grime
04-30-2009, 02:32 PM
Hi Ashley,
My answers might not be the best.

1- Whats your name?
David Grimm
2-How old are you currently?
64
3-How old were you when you were diagnosed?
64
4-How has your life changed since diagnosed?
I've not let it change my life.
5-What meds did you start on?
Desonide and Triamcinolone Acetonide
6-What meds are you currently taking?
VA cant make up its mind what to put me on.
7-Do friends treat you differently knowing that you have Lupus?
No
8-Do family members treat you differently?
No
9-What symptoms made you think something was wrong?
Bad rash on the top half of my body.
10-How long did it take for you to be fully diagnosed?
VA still working on it.
11-How often do you visit the doctor?
That depends. I keep trying to get all my different doctor visit on the same day.
12-What specific doctors do you visit?
Dermatologist and Rehumy.
13-Has Lupus affected you at all financially?
Yes. Buying the gas to go 200 miles one way to VA really hurts.
14-What about mentally?
I don't think about my Lupus. I'm already messed up mentally. :wacko:
15-Has Lupus stopped you from doing what you wanted/want to do in life?
No I want let it. I love to sail and I'll die sailing.

Hope this information helps and I know its a lot different than most will send you.

ashleybaby715
04-30-2009, 04:53 PM
thanks marla and david !
your answers are perfectly fine.
everybody is gonna be different since its kind of an opinion thing.

this is such a big help. you guys have like no idea! hehe
thanks again! :]
&& still feel free to answer...who ever else wants to... the more the merrier !

Oluwa
04-30-2009, 07:31 PM
1- Whats your name?
Oluwa
2-How old are you currently?
47
3-How old were you when you were diagnosed?
43
4-How has your life changed since diagnosed? Yes. I am filled with justifiably excuses for why I am not able to full fill many of my goals, dreams and desires. Like walking with a shoe that doesn't have a sole.
5-What meds did you start on?
Plaquenil, Ultracet, Prednisone
6-What meds are you currently taking?
Plaquenil, Deplin, Reglan, Protonix, Xyzal, Clarinex, Fish Oils, Lortab, Lunesta, Flexeril, Iron, Lasix
7-Do friends treat you differently knowing that you have Lupus? Not in a significant way...maybe a bit of empathy, sadness
8-Do family members treat you differently?Not in a significant way...maybe that I am weak mentally, not just physically..buck up girl.
9-What symptoms made you think something was wrong? Unable to walk or hold a toothbrush. Joint pain, facial rash, exhaustion.
10-How long did it take for you to be fully diagnosed? If I look back, I started showing symptoms when I was 20..so along the way I was diagnosed and treated for things that I 'didn't have', but was all actually Lupus related. So, would that be 23 years or a day when I said I think I have Lupus and met the criteria that day?
11-How often do you visit the doctor? Depends on which doctor. Every two months. Annually. And as symptoms dictate.
12-What specific doctors do you visit? Rheumatologist. Ophthalmologist. Gastrologist. Dermatologist. Family Doctor.
13-Has Lupus affected you at all financially? Not really. I retired early not because of Lupus.
14-What about mentally? More spiritually. I lost my sparkle...my inner light. It flickers.
15-Has Lupus stopped you from doing what you wanted/want to do in life? Yes. Most definitely yes. I had plans for when I retired..but I still have more life to live in me to complete those..

mountaindreamer
04-30-2009, 08:51 PM
hi ashley, good luck on your project.

phyllis
56
56
have reduced work schedule, reduced physical activity
started on plaquenil, medrol injection,
now on methothrexate
not really, just more sympathetic, and worry about me
yes, family has become protective and smothering
hands constantly hurt, extreme body aches, sores in mouth
it took me 13 years to get full diagnosis, in 1996 i was diagnosed with fibromyalgia
i see my rheumy or her assistant every 2 to 3 months, depending on what is going on with my treatment
i see a rheumatologist, primary care physician, cardiologist, nephologist, opthamologist, urologist,
my increased dr and med bills have affected my finances by eliminating my ability to save money, and by reducing my fun times.
mentally, lupus has made me accept reality, i now have to face this disease head on, and can't ignore what is happening any more
absolutely, doing what i want to do is no longer an option

wrightrs
04-30-2009, 10:15 PM
1- Whats your name?
Becky

2-How old are you currently?
46

3-How old were you when you were diagnosed?

41

4-How has your life changed since diagnosed?

I can't work a the jobs I use to work at. So not working. Hope to start working for myself. I can no longer walk. Have a lot of doctors. Take a lot of meds. Pay a lot of medical bills, In a lot of pain.

5-What meds did you start on?

Plaqunel,Naproxen,

6-What meds are you currently taking?

Fluoxetine Mobic(Naproxen), Plaqunel, Methyprednisone Levothyroxine, Furosemide, Protonix, Potassium, Vit C, Multi Vit,

7-Do friends treat you differently knowing that you have Lupus?

Yes. Some don't like it when I don't feel like doing things. Some tell me how they think I feel instead of asking me how I feel.

8-Do family members treat you differently?

They get tried of hearing me complain when I feel bad. They don't like it when I forget things I used to remember. They don't like it that I don't aways get thing done.

9-What symptoms made you think something was wrong?

Joint pain, fever, fatigue, hair loss, thrush.


10-How long did it take for you to be fully diagnosed?

It took years. But after I when I finally got a rheumy it didn't it take long after that.

11-How often do you visit the doctor?

I go to a lot of doctors. So I spend a lot of time sitting in the exam rooms.

Some times I go every month Some every 3 months. at each doctor.

12-What specific doctors do you visit?

Primary care doctor
Rheumatologist
Orthopedic
Urologist
Cardiologist
Pulmonologist
Ophthalmologist
Endocrinologist
Vascular
Gastroinerologist
Gwyn

13-Has Lupus affected you at all financially?

My ins. doesn't hardy play anything. So we have a hard time paying all the bills. Meds also make it hard. We make agreement with the Hospital. Doctor usually don't make agreements and that make it harder

14-What about mentally?

I have depression, anxiety,

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

It stopped from having children because my reproductive system shut down, years before I knew I had lupus. Job, Walking.

SuperGiv
05-01-2009, 05:33 AM
1- Whats your name? Giverny
2-How old are you currently? 19
3-How old were you when you were diagnosed? 19
4-How has your life changed since diagnosed? Not as much of a party animal and i drink/do less
5-What meds did you start on? Plaquenil
6-What meds are you currently taking? Plaquenil
7-Do friends treat you differently knowing that you have Lupus? Some of them do, some for better and some worse
8-Do family members treat you differently? Yea they worry about me lots
9-What symptoms made you think something was wrong? My legs hurting so much and my raynauds
10-How long did it take for you to be fully diagnosed? erm 18 months?
11-How often do you visit the doctor? 6 monthly
12-What specific doctors do you visit? Rheumatologist
13-Has Lupus affected you at all financially? Yea I had to quit my part time job where i earned about 600 p/m and now just live off my student loan (5000 per annum :S)
14-What about mentally? Not really, i get upset when i can't do stuff but other than that ok.
15-Has Lupus stopped you from doing what you wanted/want to do in life? Kind of, I wanted to sort of aim high on the career ladder, do a graduate scheme etc etc, be able to support myself, but seeing as a 12hr week at uni kills me, can't imagine it working out :( Although I have other stuff to keep me happy.

gina
05-01-2009, 06:02 AM
1- Whats your name? regina conwell
2-How old are you currently? 41
3-How old were you when you were diagnosed? 38
4-How has your life changed since diagnosed? marriage broke up, can't do things with kids like i use to, tired all the time can't wait to get home an nap
5-What meds did you start on? plaqunil
6-What meds are you currently taking? tramadol, folic acid
7-Do friends treat you differently knowing that you have Lupus? No my close friends are more understanding when i back out of something since i am so tired.
8-Do family members treat you differently? my children help more around house and understand why i can't do things with them like i use too. the rest of realative treat me the same. my mom does worry more than she use to.
9-What symptoms made you think something was wrong? glands in back of neck swollen, rash on chest, fever, hair loss, weight loss, was put in hospital three times for dehyrdration . the gastro doctor is the one who diagnose me with the sle with all the test he had to run.
10-How long did it take for you to be fully diagnosed? if i go back to my twenties with the fevers rashes and so furth i say at least 20 yeears
11-How often do you visit the doctor? for my annual than she sends me every where else than back to my internist.
12-What specific doctors do you visit? internist, cardio, uri the reumy doc in practice with internist so i see both if need to at same time she goes and ask him what to do with me if she needs help.
13-Has Lupus affected you at all financially? yes, lost job i had when first sick couldn't get out of bed pain so bad fatigue so bad. doctors bill are high have to pay first 2400 than i am done for year .
14-What about mentally? i get depressed, and angry but most of all look at one day at a time and say i woke up today.
15-Has Lupus stopped you from doing what you wanted/want to do in life. i have to slow down sometimes change plans try to seperate the days of week with a goal instead of do too many things in one day. takes me three days to clean house haha

i hope this helps your project have great day.

MicRoMediC
05-01-2009, 07:12 AM
1- Whats your name? Samantha Seivertson
2-How old are you currently? 22 years
3-How old were you when you were diagnosed? 22
4-How has your life changed since diagnosed? I have started on medicines that I take everyday and I actually have a diagnosis for the symptoms I've been having. A bit of relief has kind of set in.
5-What meds did you start on? Plaquenil
6-What meds are you currently taking? Plaquenil and Birth Control
7-Do friends treat you differently knowing that you have Lupus? Not my true friends
8-Do family members treat you differently? They don't know
9-What symptoms made you think something was wrong? Major hives on rotating parts of my body, body aches-especially when it's cold or going to rain, chronic fatigue, random airway swelling
10-How long did it take for you to be fully diagnosed? I've had symptoms for 10 years, after I saw a rheumatologist it took him 3 months.
11-How often do you visit the doctor? once every few months or so
12-What specific doctors do you visit? rheumatologist, allergist, obgyn(I was also diagnosed with the lupus anticoagulant antibody-high risk for blood clots and miscarriages)
13-Has Lupus affected you at all financially? yes, more frequent visits to the doctor and money spent on prescriptions and some days missed work from the pain or fatigue
14-What about mentally? yes, it's taken a toll on me mentally. i know that there's a chance i'll live a long and painful life. i'm glad there's a diagnosis but i'm scared of what new symptom i'll have now and if they're going to be able to treat it or not.
15-Has Lupus stopped you from doing what you wanted/want to do in life? definitely not, you can't "live" like that. it's hard some days but i get up every day for me and my boyfriend. i try to live my life like there's nothing wrong for the most part, it keeps my mind off of things and helps sometimes.

Bonita
05-01-2009, 09:25 AM
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

Rastagirl
05-01-2009, 11:10 PM
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 :cool2:

rob
05-02-2009, 03:49 AM
Hi Ashley, this is a great project idea. Here's my answers-




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

tasha
05-02-2009, 09:15 AM
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!!!

ashleybaby715
05-02-2009, 04:19 PM
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!

mountaindreamer
05-03-2009, 09:18 AM
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.