October 15, 2012

Tell Your Story in the Spring 2013 issue of Lupus Now

The Editor of Lupus Now magazine seeks people to interview for the Spring 2013 issue.

May is Lupus Awareness Month. What do you want the public to know about lupus? Send your answer in 50 words or less to lupusnow@lupus.org, with My View in the subject line.

If you were 60 years of age or older when you were diagnosed with lupus, we’d like to hear from you. Write to lupusnow@lupus.org, with Late Lupus in the subject line.

If you have experienced thyroid complications as well with lupus, we’d like to hear from you. Write to lupusnow@lupus.org, with Thyroid in the subject line.

Is your adult child with lupus on your insurance plan? If you are self-employed, what health insurance coverage do you use? Have you benefited from the new laws about no denial for pre-existing conditions? If so, write to us at lupusnow@lupus.org, with Insurance in the subject line.

12 comments:

linda ridpath said...

Hi, my name is Linda Ridpath and I have been living with Lupus for eighteen years now. The last two years I have also been dealing with thyroid issues. At first it was just a gradual decline of my thyroid function and a daily 50mg tablet of synthroid, but now I am having other thyroid issues. I am having more tests at this point. I was unaware that autoimmune disease and decreased thyroid function can go together until my Physician informed me. I really think that there should be an article written on the subject and printed in Lupus Now. Thank you for your wonderful magazine. Sincerely, Linda Ridpath

Nadine said...

My 15 year old granddaughter was recently diagnosed after many mysterious ailments such as stiff joints in the hand , knee dislocations that sent her to the ER on many occasions , chest pain that turned out to be swelling between the ribs., and vision problems. We are beside ourselves with worry. This is a very beautiful and active child that had to give up figure skating recently because of weak ankles. We all pray that this exacerbation will calm down, we continue to pray for our Jade!

Andrea Burchell Ezzo said...

My name is Andrea. I am 30 years old. I was diagnosed with Systemic Lupus in July of 2004, on my death bed with a severe lung infection. I have had very many more BAD days than good. I have struggled through the downs and I have sailed through the ups.. I was blessed with 2 beautiful kids after 3 miscarriages and 2 specialists said no way. They are the best things that ever happened to me.. I think I struggle with my Lupus worse with them than i do with myself.. My boys are so little yet they take care of me so well when im "flaring".. I pray that we can find a cure and continue the strides made in research to keep me healthy enough to enjoy watching my babies grow..

Tony Madureira said...

Olá,

Passei para deixar um abraço.

Tony

GiGi said...

Hi My Name Is Teresa I Have Been Having Problems Since I Was In My Late 20's I Tried To Run One Day And It Felt Like Someone Had Taken A hammer And Beat Me With It!!! I Kept Going From Dr To Dr And The Would Say Things Like Look At You, You Are A Picture Of Health. This Went On For Years And Was Getting Worse Finally One Day I Was In So Much Pain When I Went To The Dr He Told Me He Thought That I Was A Hypochondriac I went Back To Wok Feeling Depressed And Hurting Really Bad So At Lunch I Had Had Enough Of Drs Telliing Me Nothing Was Wrong When I Know My Body!!! Well I Decided To Go To Lunch And When I Walked In The House I Decided To Take My Life So I Wouldn't Hurt This Bad And People Just Looking At Me Like Im Crazy! It Didn't Work I'm Here Today And I Am Glad To Be Here. When They Put Me In The Hospital They Found The Right Dr For Me And Now I'm On medicine That Helps Me , I Am 56 Years old Now I Have Walked Door To Door And Raised 50,000.00 For All Of Us With Lupus And I'm Not Through!!!!! The Thing About This Whole Thing Is That I Hurt My Daughter So Much For Trying To Take My Life But At The Time I Just Didn't Want To Hurt Anymore.
Just Know The Key Is To Find the Right Dr!!!! In The Mean Time My Daughter Has Been Diagnosed With RA And Is Possibly Fighting Lupus Also God Be With Her She Does'nt Have It I Have Two beautiful Grandkids We Both Want To Be able To Play With And We Want Them To Have Good Memories Not All About Seeing Us Hurt All The Time!!!! Don't Give Up Stand Strong Maybe Not In My Life But My Daughters Or Granddaughters Life They Will Have A Cure My Arms Are Around All Of You Living With This!!!!!!
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Dave said...

My name is Dave, I was medically retired from the U.S. Army because of LUPUS (SLE) I was a Helicopter Crew Chief at the rank of SGT. I fought to stay in the Army after being diagnosed but was ultimately Retired due to complications after almost 7 years of service. This disease has robbed me of my full service to my country and I would want a cure, what can I do?

Tonya Alexander said...

Hi, my name is Tonya Alexander. I am 31 year old. 2 years ago I was diagnosed with Systemic Lupus. I only found out because I was pregnant with my son and my urine test kept coming back with protein in it. However now I believe I had lupus for much longer.

My first rheumatologist dr was awesome and really understood what I was going through. He understood that even with me being over weight that it was not the bottom line problem of why I have so many issues and why I constantly have protein in my urine. He shortly after a year moved to another state. I had 2 after him that I felt really didn't understand what was going with lupus.

Since I have had my son I have had issues either become worse or new arise. I constantly have achy joints (some days worse then others), migraine headaches, upset stomach, nausea, dizziness, blurring of the eyes, memory fog, fatigue, tunneling of vision, sensitive to light, ankles swelling, weakness of ankles, finger/arm/leg numbness, and sensitivity to the sun.

Those 2 last doctors have decided that most of these issues are due to being over weight and lack of sleep. I feel so ignored when I bring up the fact about articles connecting lupus to gastrointestinal issues or sensitive digestive difficulties. Both drs have told me that there is no connection. I have recently (last Monday) went to see yet ANOTHER new doctor. While he does think my weight has much to do with all of these issues, he has sent me to other specialists to rule out any other problems. So...not exactly like my first dr but seems to be better then the last 2.

I wish more drs were educated better, did more research and had better bed side manner when it comes to clients. Even though they are the doctors, sometimes clients know much more about there symptoms, and diagnosis then they do.

Keep fighting, DONT GIVE UP! I hope future finds a cure for this nasty monster called Lupus. Please don't give up!

Rose Etherton said...

I was diagnosed with lupus SLE in 2008 at 38 years old. Along the way have also been diagnosed with fibromyalgia, rheumatoid arthritis, vasculitis, and costrochondritis. My doctor is going to put me on methotrexate to try to help with the inflammation and pain since prednisone has not been working. Am completetly fertile yet I have not been able to conceive in over 3 years time. My husband and I would like to have at least one child and we don't understand why we cannot. I am in excruciating pain unless I take some pretty heavy narcotics but they do help to take away the pain and help me make it through the day to get things done. I wish I could take something non-narcotic but so far nothing helps at all. The swelling is bad and I am afraid it is going to affect my organs so I am praying the methotrexate will work for the lupus and RA. I feel like these diseases have ruined my life, taken away so much, and made me a shell of who I used to be. I pray so much there is a cure out there so people like me do not have to live in pain and give up all our dreams.

Rosemarie Maki said...

I was diagnosed with Systemic Lupus six years ago at the age of 49. Initially I went by ambulance to the ER with symptoms of a heart attack. I spent the next 3 weeks in the hospital, ruling out everything that COULD be ruled out. They could not find the answers as to why it was SO painful for me to breathe, literally unable to breathe without large doses of pain medication. I had seen every specialist imaginable while still hospitalized. I consider myself lucky in regards to being diagnosed after just short of one month, for others it's years. However, here I am six years later with no effective treatment that helps me. I spend weeks at a time in the hospital several times per year, largely in part due to the severe chest pain and inability to breathe. In such a relatively short amount of time, I have gone from a vibrant, healthy and active woman, to a woman I no longer recognize when looking in the mirror. More importantly, I am totally disabled, housebound and most times bedridden. Along with the chest pain, it has progressed to include severe pain taking total control of my entire body. My bones feel as though they are being drilled through, my muscles are in constant pain, my knee's make it impossible for me to be mobile, and the list goes on and on.So little is known by the medical professionals about Lupus, and even my own Doctor has admitted to me that he is at a loss. He (we) have tried every possible treatment that is out there and it's just not helping, at times even making things worse. The drugs that are out there that could "possibly" help have horrible side effects, only to find out 6 months to a year later that it is not doing any good and has potentially made things worse. I have to take narcotic pain medication everyday, and my days are spent in bed. Taking the pain medication barely takes the edge off of the pain, but more importantly, it is only masking the pain, NOT treating the illness itself. Lupus needs to have some major endorsements in order to fund research. Because as it is right now, it is the forgotten, invisible illness that robs people of their lives.

Anonymous said...

Hi, My name is Curtesia Smith,I was diagnosed with lupus SLE at the age of 26 after a painful miscarriage at 7 months. I have been taken prednisone for so long that I have develop IP joints in both hands. I have have surgery on my right hand twice and once in my right. I have been told that I will never be able to bend and have ant function in my thumbs fro the rest of my life. I see most 80 year old people get around better than me and Im only 35. I pray everyday that we can come together and find a cure because i feel like I have be robbed of my life and my 2 boys and family.

IM NEVER GIVING UP HOPE AND IM GOING TO KEEP FIGHTING UNTIL
THIS WAR IS OVER.

Yvonne Ryant said...

My name is Yvonne Ryant and I was diagnosed with Lupus SLE when I was 19 and also suffered a stroke. I am currently 27. Since being diagnosed I had 2 beautiful healthy sons and am a full time college student.It is a struggle day to day but my advice is take it day to day. The victims are in my prayers.

Anonymous said...

My name is Kandace, I'm 46 years old and have been living with lupus, RA, and Hashimoto's thyroid for nine years. I once heard that autoimmune disease runs in packs... guess I got a three pack!

I try not to dwell on my diseases too much. I have good and bad days like everyone else, but one thing I've learned that is just as important as taking your autoimmune meds, is to treat the depression that goes along with having chronic illness. I feel like there's a lot of people out there that are not being well managed with their depression. I don't know if it's their doctor not addressing it, or patient denial. I just know that when I addressed my depression it helped so much, mentally and physically. It didn't come easy either. It took several attempts to get the right medication.

Also, remember it's us suffers that need to get out and spread the word about lupus and autoimmune disease. I donate what I can to the LFA and pray that we find a cure very soon!