February 02, 2011

We want to interview YOU for the Summer 2011 Issue of Lupus Now!

The editor of Lupus Now magazine is seeking people with lupus who would like to take part in these upcoming articles for the Summer issue. Interviews are conducted by phone, with email follow-up. Your help is greatly appreciated, and you will receive copies of the magazine as a ‘thank-you’ gift.

Do you remember your first medication infusion? Your first kidney biopsy? Your first dialysis treatment? The first time you saw an adult rheumatologist, after being cared for in a pediatric office? This article will be about “The fear of firsts.” Please send an email with information about yourself, including your name, email and phone number, to lupusnow@lupus.org, with “Firsts” in the Subject line.

Do you think you know what event triggered your lupus? Do you know what can trigger a lupus flare for you? This article will be about the possible causes and environmental triggers of lupus. Please send an email with information about yourself, including your name, email and phone number, to lupusnow@lupus.org, with “Triggers” in the Subject line.

Have you ever experienced a flare from spending too much time outdoors? Did you go to tanning salons before you were diagnosed with lupus? Do you still use tanning beds? This article will be about sensitivity to ultraviolet rays and how this can affect lupus. Please send an email with information about yourself, including your name, email and phone number, to lupusnow@lupus.org, with “UV” in the Subject line.

Has your dentist or doctor ever told you that your mouth, teeth, and/or gum problems are lupus-related? Do you have tips on managing these problems? This article will be about oral complications and possible remedies. Please send an email with information about yourself, including your name, email and phone number, to lupusnow@lupus.org, with “Mouth” in the Subject line.


Karon Beasley said...

Fear of first: talking steriods & scared of what would happen. (Appearance, weight gain, premature aging (I was 30) diabetes, etc. The BIGGEST was when I was told that I had to give myself a shot of methotrexate once a week! I remember sittting at my kitchen table reading about how toxic the drug was, concerned about getting pregnant/losing fertility, scared to death.
14 minutes ago · LikeUnlike

Karon Beasley said...

Flares are triggered by stress, I have learned there are two types of stress: good stress (ex: vacation, planning an event) and then bad stress: divorce, loss of income, dealing with chronic illness, etc.
I also get flares from losing sleep... or doing too much over a period of time. On the days I feel I can do something I over-do and it lands me in the bed, so I have to try to pace myself. It is hard when things pile up not to want to tackle all at once.

Karon Beasley said...

Oral disease was an issue with having to have crowns, cavities, etc. I discovered this when I fell into the "mercury causes
health issues" a new dentist saw I had major problems, I had numerous cavites and some required crowns. The decay was under my cavities which another dentist missed. The source due to dry mouth. I brush three times a day, use ...Biotene tooth paste/mouthwash in the afternoon/evening, (Biotene replaces natural enzymes)Sensodyne in the am, do flouride/flouride treatments and floss. I use both Sonic Care and a manual toothbrush if I am out. Have not had problems since! Again the issues causing this was dry mouth so if someone has problems, don't beat yourself up. Some meds cause this as well, dry mouth. I have Sjogren's so I knew the source. I get my teeth cleaned every 6 months. I also use sugar free lemon Ricola drops to stimulate natural saliva, and drink lots of water. Look for a dentist that might offer a new patient cleaning or check out the dental discount cards, they save money.

Hdgirlie@aol.com said...

I could discuss most all of these things but what I want to bring to the table is an open discussion on the use of medical Marijuana with DR approval...I live in a state that does not allow this but is coming up before the legislators soon. I do not smoke it at this time cause I do not want to be a criminal. But if my DR. approved it and I chose to use it. Is that not my and my Dr's decision. Laurie

MJ said...

I sent an email, but wanted to respond in the comments section as well.

A significant trigger for me is Fluorescent Lighting. I'm home bound because of this - there is, no joke, nowhere for me to go that doesn't make me feel ill. Low lit bars and restaurants occasionally, and friends homes IF they don't have fluorescent lights.

Just one example: My boyfriend and I are house sitting for his parents for two weeks. I literally had to walk around the house and unscrew them before I could spend time in the rooms. I know when a light is fluorescent because the effects are absolutely immediate.

I'd love to discuss this more with others with similar issues.

Anonymous said...

I was diagnosed a year ago. I was on medication for about 6 months before I lost my insurance. Now I am dealing with the fact that apart from living with Lupus daily without medication, it effects every aspect of my life. My vision has gotton alot worse in one year's time. As well as dental problems. It effects everything down to what birth control you use. When you have Lupus, you no longer are in control of your own life.

Sy'Donna said...

my mother was diagnosed with Lupus in 2000 and has had many complications over the years including stroke and eventually death last year. Family members, even those that do not have lupus, also live through the ups and downs of lupus.

tmglancy@yahoo.com said...

I was diagnosed with Lupus in 2007 after receiving a bad batch of the anthrax shot given to me by the USMC.I was hospitalized for 7 months and then in and out for awhile after that.Now i have medical retirement from the USMC at the age of 20 and still almost three years after leaving the corps the are still not giving me all my beneifits for medical and dental.

Anonymous said...

lupus has changed my life in more ways than one ,i love the outdoors ,hunting,fishing and 4 wheeling ,but the sun and it rays cause me to have really bad flair ups.so in the summer month i try not to be out doors until late after noon or when the sun gose down so i dont end up sick ,i was laided off from my job and now have no medical insurance to help with medication and it cost alot of money ,lupus sucks big time .being a all-american wrestling star and two time state champion i never guessed i would end up with sle lupus.

Rachel said...

I have Discoid and nervous system Lupus. I know all my triggers, of which I cannot prevent them.
Stress is top of list, I easily stress with this disease. Weather extremes. Like severe cold or hot. This past 2 weeks was severe cold and I ended up in ER 3 times. I was so sick, stressed, nausea, tired, rash, joints,. I also cannot have Gluten, salt, sugar.Especially splenda, no diet pop, no tomatos, no cucumber,bell peppers, no cheese, no coffee, I drink plain hot tea. no pizza!!! LOL. I took on swine flu in 2009 and Lupus came out. I cannot due flourescent lights at all or hot sun. The past year and a half has been challenging as this was a shock. Rachel