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Megs91
03-29-2011, 11:29 AM
I have a mild condition of antiphosphilipid syndrome, but my mum suffers badly from SLE. I'm studying art at uni and am doing a project based around lupus and the effects it has on its sufferers, and when I began researching it I was shocked to realise how few people who don't have lupus have even heard of it. I would be hugely greatful if anyone would be able to reply to this thread about their experiences with lupus; for example, how you feel about it, how it's changed your life, how you cope with it and how you felt when you were diagnosed. This would be greatly appreciated, by anyone suffering or anyone who knows sufferers. I am aiming to make lupus more widely known, or at least by those who will see my work, and the more replies and opinions I have, the more accurate my work will be in representing lupus sufferers, so the more the better!
Thanks for your time guys!

ritzbit
03-29-2011, 11:44 AM
Lupus makes me feel weighted down, constantly have a lead blanket holding me down. Wrapped in a fog. When I first found out I thought it was the end of my life (I was 16). One of the first things my doctor told me was that I would have to plan to have children, because I would be a high risk pregnancy. Freaked me out becaues I was only 16 and not planning to have kids anytime soon, but had always planned on a big family and I saw that vision crash down right then and there. I've always had an interest in biology, and have decided to become a Rheumatologist because of this. Dont know if thats what you were looking for but I hope your project turns out amazing =) I think its a great idea.

Megs91
03-29-2011, 11:54 AM
That's exactly what i'm looking for; I just need to look at other people's experiences as well as mine and my mums, and you're so helpful!I'm sorry to hear that, but you sound like a strong kinda person and I think it's amazing that you've decided to become a Rheumatologist- way to fight back! and good luck with it, i'm sure you'll be able to do whatever you set your mind to (:Thanks so much, very helpful (:

Peridot20_Gem
03-29-2011, 01:26 PM
Hello Megs91,

I've done that many threads it's hard to explain everything i've gone through but they're there for you to view, as a large majority of member's know my situation.
I was born with it started feeling affects from the age of 5yrs old and at 14 more signs was showing, at 18 it started showing it's true colours by giving me ailment after ailment all connected to lupus till now at 42 and it's only been the last 2yrs i was diagnosed with Lupus and also what i have below linked in my signature but my god it is making me suffer now and like ritzbits i've never had children because of what i've gone through.

When i actually come to think, i could right my own book besides advertising neglect in it off doctor's who never went a step furthur with bloods so i could have been treated years ago.

Well i do know one thing now in life it's dragging and waring me down, sorry for ranting on but this is how i deeply feel.

Terri x

steve.b
03-30-2011, 05:43 AM
i would be happy to help, but also do not know where to start.
perhaps if you were to write a questionaire, we could answer it.
that would have everyone thinking the same thing at the same time.
make your research easier to decipher.

send me a personal message if it makes it easier, love to help you.

rob
03-30-2011, 05:59 AM
i would be happy to help, but also do not know where to start.
perhaps if you were to write a questionaire, we could answer it.
that would have everyone thinking the same thing at the same time.
make your research easier to decipher.

That's a good idea Steve.


Megs91,

I would be happy to help too, but like Steve, I don't know where to start. If you could do a questionaire, that would really help.

Rob

Megs91
04-05-2011, 01:22 PM
That'd be great, i've been conducting interviews and handing out questionnaires but wasn't sure if you'd want to answer a load of questions. It'd be hugely helpful if you could though, but obviously only answer the questions that you want to if you want.These are the questions i've been asking everyone, if it doesn't apply to you just put n/a, or if there's something you want to write that's not in the questions just add at the end. I'm aiming to make people more aware of lupus, so the more honest the better, and feel free to ramble and rant - its useful (: Thanks for your time!

1- What kind of lupus do you have and how would you describe it, and your experiences with it?

2 - At what age did you get diagnosed, and how long have you had it?

3 - Does it feel like you've had it longer?

4 - How did you feel when you first got diagnosed?

5 - How do you feel that lupus have affected your life, lifestyle and personality?

6 - Do you feel that having lupus has affected who you are as a person?If so, how?

7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?

8 - Do you feel you having lupus has affected those around you?If so,how?

9 - Do you feel you have their support?

10 - What do you think about the suuport you get from doctors etc?

11 - How do you feel about the medications you have to take (if any)?

12 - What's the most amount of medication you've had to take at one time?

13 - Do you feel the medication has changed you in any way?

14 - How do you cope with having lupus?

15 - Do you feel that lupus and the treatments for lupus get enough attention medically?

16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?)

17 - Any other thoughts on lupus?

steve.b
04-06-2011, 06:12 AM
as i stated earlier. i am happy to help.
i have copied the questions, and will reply in a day or two.

i also encourage others to reply as well.

tgal
04-06-2011, 09:48 AM
I have opened this thread 4-5 times and I close it every time without comment. Please don't take what I am about to say personally, this is something that is wrong with me and not anything wrong with your questions. I believe sometimes things happen that cause us to look at ourselves in a new way so we can see what we need to change. This thread is one of those for me.

I am angry. Angry that I have to answer questions like this. Not so much in this thread but to answer them in general. If I had cancer no one would have to ask me questions like this. They would know the answers already because they are informed about cancer. Why aren't they informed about Lupus? There is so much research being done on cancer, diabetes, Alzheimer and every other disease that people understand what being ill with those diseases are like. Why not Lupus and Autoimmune Diseases? Why do I have to have people look down at me and think that I just don't want to work when I can't get out of bed for a couple of days?

Yes, I am angry that you have to ask questions like "did it affect your life". Would you need to ask that question of a cancer patient? No. You would already know because you either know someone with it or have run, walked, cycled, or given money to help fight that disease. That is as it should be. That is not how it is with Lupus and other AI Diseases. Why is it that people are not out pushing for a cure for this disease like they do cancer. Sad thing is that I know why. Too often we don't LOOK sick enough so they just think we want to ride the government "gravy train". Ha! Ask any of us that have been trying to get that how much of a gravy train it really is!

Please understand that I am not AT ALL angry with you starting this thread and asking these questions. This is what should happen more often. People should want to understand what we go through being ill. Maybe it is that I am just starting to come out of a flare and I am way too emotional but the fact that you have to ask just ticks me off!

PS I will answer the questions later because I won't punish you for doing what very few others will do. You are trying to understand and I thank you for that!

tgal
04-06-2011, 01:45 PM
Sorry this one accidentally got locked. That has been happening quite often. Thanks Sandy for the heads up! If ya'll see a thread locked and don't know why please contact Rob or I because most likely it is a mistake!

steve.b
04-07-2011, 06:57 AM
as i said, only too happy to reply.
1. i have sle. i was always sick and in pain, but never knew why. i unfortunatelly got that sick, tha tit nearly killed me, litterally.
2. diagnosed at 47, i have had it for over 30 years.
3. yes.
4. i was shocked. i only knew 1 other person who has it, but believed it was usually terminal.
5. i had to retired on a disability pension at 47. i now earn less in 14 days, than i used to in 1 day.i have lost most of my personality, (i am non emotional).
6. i have lost most of my emotions, my drive and i can no longer join in most of the activities i use dto do. it has isolated me from my family and friends.
7. life is a lot harder now. i no longer have goals to work towards. i have lost my house ect, and cannot borrow to buy/build a nother one.
8. i used to earn about $160,00.00 a year. now i am on a disability pension. just over $13,000.00 a year. i am a physical liability to my family. i have also become a mental strain.
9. i know my family support me.
10. i have sort out good caring medical practioners, so i now get excellent support. it was not always so.
11. they are a neccessary evil.. no-one likes to deliberately poison there own body.
12. i now take 18 pills a day. more when in a flare or i am sick.
13. good - i no longer suffer bad headaches. bad - i have lost most of my emotions.
14. one day at a time.
15. no.
16. lupus effects a lot of people. 16,000 dianosed last year alone. estimated at over 1.5 million in the usa alone. non-sufferers basically do not know about lupus. what they think they know is wrong.
17. lupus is under diagnosed, because most doctors do not know enough about it themselves. they will not diagnose someone with an ailment, they do not know about.

i hope these answers help.

i encourage others to fill out the questionaire also.

Nat
04-07-2011, 07:43 AM
Hi megs,
Thanks for posting this, really allowed me to take a step back an identify how my diagnosis has impacted my life, so far its been something I just deal with cos I have to but I haven't really ever taken the time to sit back and think. So thanks :-) hope my answers can be helpful, sorry if they're a bit loopy or make no sense I've just taken a rather strong painkiller because some smart person forgot to take their steroids this morning!

1- What kind of lupus do you have and how would you describe it, and your experiences with it?
I have SLE and antiphospholipid syndrome. I think I've been luckier than a lot of others cos I've had 2 bad flares and only took a few weeks to diagnosed. In my experience the flares are the shit part (go figure!) But its the changes u need to make to be able to cope that take time to adjust to.

2 - At what age did you get diagnosed, and how long have you had it?
24 and have had it coming up one year.

3 - Does it feel like you've had it longer?
Surprisingly no, feels like it was only a few months ago that I started experiencing all my symptoms

4 - How did you feel when you first got diagnosed?
I cried for about 2 hours because id been in the emergency room about 5 or so times in the period of 2 weeks because of the pain then received my discharge summary in the mail that said "patient may have SLE" then I googled that....and lost my shit! Haha

5 - How do you feel that lupus have affected your life, lifestyle and personality?
Effects my job because of the brain fog so Im forever questioning my assessments, I get sooooo frustrated with being asked the question "ohh what's lupus' that sometimes I don't say that's what I have cos I'm sick of explaining it. Im a pretty laid back person but I feel like its starting to effect my personality because i feel like sometimes I don't have the appropriate emotional response to a situation.
I used to love the beach too but last time I went in the sun for 30 mins I got scorched and flared up!! So that bit is shit!

6 - Do you feel that having lupus has affected who you are as a person?If so, how?
Just a part of me now that I have to deal with on my journey!

7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?
I think I wouldn't be as healthy as I am...I know thats weird to say but I've lost 13 kgs and stopped boozing so much but who knows where the small adjustments we make everyday lead!

8 - Do you feel you having lupus has affected those around you?If so,how?
Yes!!! My poor parents, brother and boyfriend. When I got my first flare I couldn't walk for 3 weeks I couldn't do anything for myself so my family did everything for me, literally everything. All I was physically able to do was chew food every few days and be awake and cry. Now living with my partner when I get a bit sore he has to do more things around the place. Good bloke but doesn't complain!! Haha

9 - Do you feel you have their support?
More than anything

10 - What do you think about the suuport you get from doctors etc?
Fantastic...my GP is amazing and my rheumy is fabulous too...if anyone in Perth is ever looking for good docs ill give u their details!!

11 - How do you feel about the medications you have to take (if any)?
I'm very superficial like this but the main things that I've worried abt is getting fat on,steroids and losing my hair on the methotrexate! I joke about this to my docs but it is a small worry for me. But they are working well so definitely thankful they do their job.

12 - What's the most amount of medication you've had to take at one time?
Every night I take 7 tablets and every morning I take 5 (when I'm on steroids)

13 - Do you feel the medication has changed you in any way?
Not so much

14 - How do you cope with having lupus?
I think relatively well, I can work I can still do most things I like but the flares are the trying times. They will test anyone.

15 - Do you feel that lupus and the treatments for lupus get enough attention medically?
Definitely not. Just ask anyone who doesn't have lupus what It is and the lack of knowledge will answer that question itself.

16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?)
Absolutely not! We need a lupus awareness day (I'm sure there probably is, but see even I don't know abt it and I have lupus)

17 - Any other thoughts on lupus?

tgal
04-07-2011, 09:21 AM
OK I need to be clear about something. I don't want ANYONE to not post here because of what I said. I will most likely answer these questions myself now that I had a huge shot of steroids and will be thinking more clearly.

My issue was NEVER with this post or the questions here. My issue was that we had to do this at all! I was upset that so little is known about this disease that these questions had to be asked. This is a great thread that will let us get to know each other better and maybe help someone understand what our life is like. I am sorry if it came off as being angry about the thread itself. That was not my intention!

red246
04-07-2011, 11:41 AM
1- What kind of lupus do you have and how would you describe it, and your experiences with it?
SLE, I can't even begin to completely describe it. There isn't a single facet of my life that it hasn't affected. There are times when I almost feel normal and there are times where I feel like I belong in a nursing home.
2 - At what age did you get diagnosed, and how long have you had it?
I was 38 when I got diagnosed. So, it's been almost 2 yrs ago.
3 - Does it feel like you've had it longer?
I'm pretty sure I've had it for a lot longer, probably since my teens - only milder then.
4 - How did you feel when you first got diagnosed?
It was a relief to know that it wasn't all in my head!
5 - How do you feel that lupus have affected your life, lifestyle and personality?
I have had to slow down. I can't be "SuperMom" anymore. Even though I don't have issues w/the sun - I do have issues w/the heat, so even if it's nighttime I still can't go out if it's too hot. I really don't think it has effected my personality - I'm still the same person I was before on the inside where it matters the most!
6 - Do you feel that having lupus has affected who you are as a person?If so, how?
No
7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?
When I first started to get sick, I was working and my husband was the Stay @ Home Dad. I had a very good job w/a one of the nation's top homebuilders in which I continually got promoted.
8 - Do you feel you having lupus has affected those around you?If so,how?
Yes, my immediate family continually worries about me - especially my youngest son. He is very scared that I'm going to die.
9 - Do you feel you have their support?
Yes.
10 - What do you think about the suuport you get from doctors etc?
Not enough. They just don't get it.
11 - How do you feel about the medications you have to take (if any)?
Steroids stink as do most of the meds w/their side effects.
12 - What's the most amount of medication you've had to take at one time?
Seven, I think.
13 - Do you feel the medication has changed you in any way?
I'm heavier than I've ever been.
14 - How do you cope with having lupus?
Take things one day at a time. Enjoy the little things. Try to learn my limits & not push myself past them!
15 - Do you feel that lupus and the treatments for lupus get enough attention medically?
NO WAY!!!!!
16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?)
It definitely needs to be more well known. Before I got sick, I had heard of Lupus - but didn't know what it was.
17 - Any other thoughts on lupus?

tgal
04-07-2011, 02:05 PM
1- What kind of lupus do you have and how would you describe it, and your experiences with it? SLE Lupus with secondary seizures and tons of other wonderful side effects

2 - At what age did you get diagnosed, and how long have you had it? I have been fighting for a diagnosis for about a year and I just got it a couple of months ago. I would say this flare started 4 years ago and began with an attack on my gallbladder. I do remember having an episode as a teen no one understood.

3 - Does it feel like you've had it longer?Some days it feels like forever and some days don't

4 - How did you feel when you first got diagnosed? I cried. I cried because someone was actually listening to me

5 - How do you feel that lupus have affected your life, lifestyle and personality?A complete 180. I am still trying to learn this person that has taken over my mind and body

6 - Do you feel that having lupus has affected who you are as a person?If so, how?Without Question. As I said above. I am still learning who this person is

7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?Of course. I was a single mother who worked very hard at, and was very good at her job. At the time the sky was the limit and 1 year ago today I had a seizure in my office and have been unable to work since.

8 - Do you feel you having lupus has affected those around you?If so,how?Again, without a doubt. There are times that my daughter is more of a mother to me than I am to her. She too is having to learn who this new person is in my body

9 - Do you feel you have their support?My daughter, 1 niece and 2 friends. The rest of my family and friends don't get it at all.

10 - What do you think about the suuport you get from doctors etc?Don't get me started! Most of the people on this board know more about Lupus and AI disease than they do. After cardiologist, rheumys, pulmanlogist, 3 neurologists (each had their own specialty and they wouldn't treat the other issues) and 3 GPs I FINALLY found someone that listened to the WHOLE story and looked at me without blinking and said "Of course you have Lupus". That was a great day

11 - How do you feel about the medications you have to take (if any)? I have a love/hate relationship with steroids. They make me feel SO much better but as a doctor said to me once "they will make you feel good all the way to the grave. Plaquenil was easy for me, no issues. I take tons but they are just to deal with the symptoms. I wish someone would find a way to make me well.

12 - What's the most amount of medication you've had to take at one time? 12 (kinds of pills and many of those I took 2 or 3 times a day)

13 - Do you feel the medication has changed you in any way? This whole experience has changed me. I am sure the meds played a part

14 - How do you cope with having lupus? How do I not cope with it? I wasn't given a choice in the matter. I do the best I can to to enjoy the good days and not focus too much on the bad ones

15 - Do you feel that lupus and the treatments for lupus get enough attention medically? Pfffft. Please! Absolutely not (see my first post in this thread LOL)

16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?) Nope. Once again see my first post )

17 - Any other thoughts on lupus? Too many to name

Saysusie
04-07-2011, 08:30 PM
1- What kind of lupus do you have and how would you describe it, and your experiences with it?
I have SLE. For many years, my Lupus has been described as "Mild" having been downgraded in the early 2000s. Prior to being downgraded, I was told that I was dying from the disease and probably would not live to the age of 40.

2 - At what age did you get diagnosed, and how long have you had it?
I was 35yrs old when I was diagnosed. I have lived with this disease for 24yrs.

3 - Does it feel like you've had it longer?
I feel as if there was NEVER a period in my life when I did not have this disease!

4 - How did you feel when you first got diagnosed?
I was gravely ill and wanted to just die and get it over with

5 - How do you feel that lupus have affected your life, lifestyle and personality?
Lupus has affected every part of my life. Lupus took my daughter away from me and now I live a life without my beloved child. So, it has had a profound affect on me. However, I have learned to appreciate those things that are truly important and to be grateful for the blessings that I have.

6 - Do you feel that having lupus has affected who you are as a person?If so, how?
Absolutely..as described above

7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?
I don't know if I am as much affected by MY Lupus as I am by the fact that my child died from the disease. I would happily suffer endlessly with this disease if I could have my child back!

8 - Do you feel you having lupus has affected those around you?If so,how?
Having a wife with the disease and losing a daughter to the disease has helped to make my husband a kinder, gentler, more compassionate man. My son has learned, as I have, to appreciate each small blessing that he has and we all have strived to be the best people that we can be in order to honor the memory of our daughter/sister/

9 - Do you feel you have their support?
Absolutely

10 - What do you think about the suport you get from doctors etc?
In my 24yrs with this disease, I have been through many doctors. At this point, I have a doctor who listens to me, does what I ask her to do, and is thorough in her examinations. We have mutual respectful relationship.

11 - How do you feel about the medications you have to take (if any)?
I also have Fibromyalgia and, at this point, the FM causes me many more problems than my Lupus

12 - What's the most amount of medication you've had to take at one time?
I am currently taking 12 medications..when first diagnosed, I was taking about 16 different meds

13 - Do you feel the medication has changed you in any way?!
Only in that I get tired of taking them, so I am quite often angry about that

14 - How do you cope with having lupus?
Lupus is what I have..it is not who I am!

15 - Do you feel that lupus and the treatments for lupus get enough attention medically?
No

16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?)
No

17 - Any other thoughts on lupus?
Not right now..in the midst of Brain Fog and extreme fatigue..so I can't think at all. Perhaps I will come back to this question another time :-(

Peace and Blessings
Namaste
Saysusie

tgal
04-07-2011, 08:36 PM
I had to chuckle at the being angry about your meds. I have been mumbling under my breath lately about these darn (and I don't say darn) pills!

I take meds for so many symptoms that those are often worse than the Lupus meds themselves. Fibro meds, seizure meds, TN meds and the list goes on and on. I am not always sure if it is the med itself that bothers me or how they interact with the others