View Full Version : Hi, anyone interested in helping me with my project?

02-23-2010, 02:51 PM
Hi everyone,

I was just wondering if anyone would be interested in answering a few questions I have come up with for my project at uni.
They are as follows:

1. What type of lupus do you have?
2. How did it change your life?
3. Have you had to/been able to adjust your lifestyle to fit your illness?
4. If yes how? In what way?
5. If no, how has it limited you?
6. How has your medication affected your life, if at all?
7. Are you on medication to alleviate your lupus symptoms or to control your lupus?
8. Why did you join the WHL forum?
9. Does it help to have support and being able to talk to others in similar situations to yourself?
10. If yes, in what way?

Also if you can think of any other information that might be helpful, I would love to hear it. If you would like details about my project, please feel free to send me a message.

Thank you so much,

Harriet xxx

02-23-2010, 10:20 PM
hi harriet,

wow, i will be happy to help with your project, and answer your questions.

1. I have SLE, along with the attached illnesses fibromyalgia, sjorgern's, raynaulds

2. It changed my life by completely changing it. I used to be very physically active, now i do very little. I used to never go to drs., now i go to several a month. I have probably seen every kind of "ologist" that exists -

3. I have been able to make the necessary adjustments because i am older and my kids are grown. I am at a point where i can semi-retire from work, so i don't have the daily obligations that so many young sufferers deal with.

I have brought my son home to help me with household chores, and i now pay for repairs and upkeep that i used to do myself.

I drive a different car, that is easier for me to get in and out of

6. My medication effects include the typical side effects that come from the medications, plus requiring me to visit more drs. in an effort to keep an eye on key organs that might be affected by the medications.

7. Reducing/alleviating symptoms is the only way to control lupus... our medications are designed to slow the progression of the disease, but there is no "control" or "cure"....all we can do is treat the symptoms and the damage.

8. I joined WHL when i was diagnosed because i was scared to death, and needed to talk to someone who truly knew what i was facing.

9. does whl forum help....absolutely....this forum is the place where i learned about my disease, and where i learned how to be in charge of my disease.

If you are allowed to use them, there are a couple of threads here at the forum where people expand on how lupus has changed their lives, and how everyone is coping...

02-23-2010, 10:44 PM
Hi harriet i have sle andthyroid disease. Yes it has changed my life and has put limitation on what i can do i now need help with walking with stick and when really bad wheel chair find normal household chores difficult and have trouble dressing myself and enjoying the outdoors has become extremely difficult. I take my medications to control my lupus sometimes it helps sometimes it does not. I have to have regular checkup on eyes and kidneys iandheart and lungs . I do have some side affects to medication but you weigh that with not having it and the benifits outweigh the side affects in my case i joined whl over a year ago because i needed information and someone else to understand what i go through on daily basis. Yes this site has been one the best things i have ever done i have learned so much and recieved so much love and support here it has been a lifeline to me. Hope this helps kim l goodluck with your project.

02-24-2010, 06:18 AM
1. What type of lupus do you have?
A: I have SLE although my new Rheumy is now saying I have 'suspected' SLE.

2. How did it change your life?
A: I'm no longer able to do some of the things that I used to do although because I can't rush around so much now then I'm sitting down relaxing more and this has allowed me time to do some of the things I kept putting on the back burner. Its also given me the courage to go out and join a writers group and meet new people which I never thought I had the courage nor the time to do before.

3. Have you had to/been able to adjust your lifestyle to fit your illness?
A: Its certainly not easy but I have to adjust and so I do.

4. If yes how? In what way?
Its been very difficult as I have two young children under the age of 7 and they have needs of me. But I have a very understanding and helpful partner so that helps a lot. But mostly I've just learned to slow down, to not worry if I'm late for something (unless its a doctors appointment ~lol~) and to allow myself more time to do even the silliest little thing.

5. If no, how has it limited you?
A: N/A

6. How has your medication affected your life, if at all?
A: It makes my join pain a bit better so its affected me in a good way. At the moment, however, I'm being seen for a problem with my eyes although they're not sure its actually caused by the medication or not. The medication also means more frequent trips to the doctors or the optitions to get checked out.

7. Are you on medication to alleviate your lupus symptoms or to control your lupus?
A: Lupus is a bit of an unstable beast and you can't really control it, it certainly seems to have a mind of its own. Best you can do is alleviate some of the symtoms and learn to cope with what you can stand.

8. Why did you join the WHL forum?
A: I came here trying to find out what Lupus was as I'd never heard of it. I found this place before my diagnosis when I was just beginning the testing process. Its my home away from home now, this is my Lupus family.

9. Does it help to have support and being able to talk to others in similar situations to yourself?
A: It definatley helps to have support but it helps me just as much some days to help others. I've put up pictures of my lupus journey, my sunburn, my rash etc in the hopes that someone else might look at them and go 'that's exactly what I look like' etc.

10. If yes, in what way?
A: Ooops see above!

Good luck with your project, let us know how you get on! ~hugs~
C x

02-24-2010, 09:04 AM
Hello Harriet,

I'd be happy to help you with your project. Here goes-

1-What type of Lupus do you have?

I have Systemic Lupus, as well as MS.

2-How did it change your life?

The SLE diagnosis changed my life in every way. My career, marriage plans, and friends all ceased to be in the months after the diagnosis. These events caused me to attempt to end it all, which I nearly succeeded in doing. This forced me to re-examine my life, and make drastic changes for the better.

3-Have you had to/been able to adjust your lifestyle to fit your illness?

I had to adjust my lifestyle, and nearly every other aspect of my life to fit my illness.

4-If yes how? And in what way?

My adjustment was nothing short of a totally new start in life, with a move of 3000 miles, a new home, new friends, new interests, and renewed ties with my family. My focus is now on taking care of myself, doing things with my family, and spending time with my new friends. I have found new hobbies and interests that are well within the limitations placed upon me by Lupus, yet are even more challenging and fun than previous ventures. And, all my new friends know about my disease, and are very understanding. My family is also very supportive now.

5-If no, how has it limited you?

The new opportunities and things I've discovered have far outweighed any limitations Lupus initially placed upon me. At this point, my health is obviously worse than it was before I got sick, but my life is far better, if that makes sense.

6-How has your medication affected your life, if at all?

Medication, for the most part, has had a positive effect on my life. Plaquenil has been very effective and well tolerated, and the meds I take for MS have had their bad side effects in the short term, but are beneficical in the long term. Meds have been a blessing for me.

7-Are you on medication to alleviate your Lupus symptoms or to control your Lupus?

My meds keep Lupus under control more than they immediately alleviate any symptoms. But, by keeping the SLE activity in my body to a dull roar, I avoid symptoms getting worse in the future.

8-Why did you join the WHL forum?

I joined the WHL Forum for many reasons. The thing that led me here, was isolation, loneliness, and an overwhelming need to talk to others like me. I joined this site in particular, because of the people here. Saysusie and Oluwa were the first people I met here, and are valued friends to this day. There is a sense of friendship, even family here that is absent at other sites. I have now been a member here for two years, and a Moderator for one, and I don't know what my life would be like had I not discovered the friendship and support I found here.

9-Does it help to have support and being able to talk to others in similar situations to yourself?

No question-Absolutely YES!

10-If yes, in what way?

In what way? Well, there are many, but the most important one for me, is the fellowship and cameraderie I get from being around others who know exactly what I deal with, and have gone through. I compare it to my time in the military. There were some scary things that my friends I served with and I went through to be sure, but the fact that we had each other, and experienced these things together, gave a strength that could not be beaten. My feelings towards my friends here, are very much like those I have for the people I served with, we are the only ones who can really understand what it's like to be us.

Also, being able to help others, is something that helps me in the long run. If I can calm someones fears, even for just a little while, or help someone laugh and get through a rough patch, it helps me as well. And I always know that those people will never hesitate if the tables are turned, and I am the one in need, and indeed, they are always there for me. We lean on each other.

Well, I hope that's not too long winded. Good luck with your project, let us know how it turns out.


02-24-2010, 10:31 AM
I also will help you with your project 1. I have sle and myositis and rhaynauds plus a cage and plates screws in my back rhumatoid arthritis barrottes esophagas and have had a bleeding ulcer. 2. This diease changed my life in that i do not have the strength to do the things i was able to do before. My husband and i are walkers and now i have to take pain meds before i go or i do not make it. 3. But that has not stopped me from going because i am trying to keep my bones strong and keep the degenerative diease in my spine from becomming worse. Besides that after my first back surgery i lost 60 lbs and do not want to gain it back. 4. I guess i have already told that in the last one. 5. no 6. the medicine has greatly affected me in different ways. I have been changed from one to another on different dosages because it really screwed up my blood counts. I am currently on plaquinel 200 mg for 457 days and prednisone 7 mg for 865 days and macrodantin daily methotrexate 20 mg and a calciumsupplement to curb the side affects from my metho. The meds help with the pain and the swollen joints but i do worry about the affects it will have on my body. 8. I found this web site because i was really confused about this diease and what is does to you because i did not know anyone who had this. I am so thankfull for all the wonderfull kind caring people who have given me so much answers and frienship.. 9. It helps immenslly with the things you face every day to talk to others who are going what you are going through. 10. The support and friendships are very important. Bonita

02-24-2010, 12:09 PM
Hi Harriet,
Here are my answers

1. What type of lupus do you have?
My official diagnosis is Mixed Connective Tissue Disease. I tested "mildly" positive to Lupus, Rheumatoid Arthritis, Sjogren's Syndrome and Psoriasis. Lately, I've had a few symptoms of Raynaud's Syndrome, too. I was diagnosed with Meniere's Syndrome 12 years ago. My rheumy now thinks that this might have been my first indication of an AI issue, calling it Autoimmune Inner Ear Disorder. I was also diagnosed with Spasmodic Dysphonia 4 years ago. This affects my vocal chords, making them spasm uncontrollably. Is this another AI issue? I don't know, but it seems to be the general trend. I was found to have Avascular Necrosis in my right knee in 2008 and had arthroscopic surgery in Dec. of that year.

2. How did it change your life?
I was once a very energetic person. I've lived in several states with my AF officer husband, raised 5 kids, and done several jobs, including running a daycare and working as a midwife's assistant. I had returned to my first profession, teaching, in 2002. By 2005, the AI issues started to affect my teaching. I had to have treatments for the SD to keep talking. I often fell in front of my classroom, and I started using my cane to survive in the halls with all those teenagers. When the AVN began to affect my knee in 2008, I had to use a rolling walker in the halls.
I gave up my teaching job in June, 2009. My husband was given the opportunity by the AF to transfer to California to work on a PHD. The pain and fatigue that I was feeling at my job helped to influence us to take the opportunity, since I didn't see myself lasting another year in the classroom. I truly miss my students.

3. Have you had to/been able to adjust your lifestyle to fit your illness?
Luckily for me, working was not a necessity, so I'm now "retired" from teaching. My children are all adults, so the only "little ones" who depend on me now are two cats.

4. If yes how? In what way?
I'm now resting much more and paying attention to my body. I've become very careful about what we eat, and I'm cooking fresh foods from scratch again, as I used to do when my children were small. I'm keeping up with my doctor and PT appointments, too. I'm living a laid-back California Coastal lifestyle, and I'm not committing to many social engagements unless I'm feeling like it. I still love to travel, and I'm refusing to let my physical condition keep me from it. I still travel whenever I can, but I go a bit slower and use a wheelchair when I can.

5. If no, how has it limited you?
It does limit me, and it is frustrating. I tire so easily that I can't shop for hours like I used to. I'm frustrated that I can't comfortably walk on the beach with my husband. I also miss teaching. If I had more energy, I would be in the local schools, subbing.

6. How has your medication affected your life, if at all?
I have an injection of Methotrexate once a week. On the day after, I have to have a "down" day. It usually makes me queasy and fatigued for the day, and I have to stay close to the restroom. The rest of the week, it gives me a bit more energy to do the things that I want to do.

7. Are you on medication to alleviate your lupus symptoms or to control your lupus?
According to my rheumy, the Plaquenil and the MTX are supposed to slow down the progression of the AI diseases. I have noticed that my rashes are under control, and it has helped quite a bit with the fatigue and joint pain.

8. Why did you join the WHL forum?
I was using the internet to learn as much as I could about Lupus and other AI issues when I found WHL. I learned long ago when I joined La Leche League for support with breastfeeding my first baby that the best source for support with any medical issue is the people who are dealing with that issue. When I found WHL, I immediately knew that these would be the real experts. I also sought out an online AVN group when I got that diagnosis.

9. Does it help to have support and being able to talk to others in similar situations to yourself?
Yes! Supporting each other and comparing notes really does help. It always helps to know what questions that I need to ask my doctor, and often one of our members can do a better job of explaining something than the doctor. It also helps so much to know that I'm not alone in this. That is a comfort, and we all understand each other much better than the doctors, or even our friends and family members can.

10. If yes, in what way?
As Rob mentioned, I also feel very good when I can help others here on WHL. It's my way of giving back. There have been many members who have helped me, so I'm glad to help others. It's also a great way to feel connected to others in the world. This is probably the teacher in me coming out, too. I became a La Leche Leader and a midwife's assistant for many of the same reasons.

I hope that this helps. If you think of any other questions, I'll be glad to add more. Good luck on your project.