KissedByAButterfly - PLAQUENIL,IMURAN,PREDNISONE,TRAZODONE HCL,TYLENOL/CODEINE #3

KissedByAButterfly 35 Female

Location: MANASSAS, VA USA

My Bio

Recent Press Release, A little about me... RICHMOND, VA — Concerned that it has been more than fifty years since the U.S. Food and Drug Administrative approved a new treatment for the disease lupus, and that many of the drugs currently used to treat lupus can have debilitating side effects or cause other health problems that are worse than the disease itself, supporters of the Lupus Foundation of America (LFA) are taking it to the streets … and the raceway, too. Hundreds of people living with lupus, their families, friends and others who care about them will participate on October 31, 2009 at Richmond International Raceway in the inaugural Walk for Lupus Now to raise money for medical research, education programs and support services of the LFA. The walk will officially start on pit row promptly at 10:00 a.m. Registration starts at 9:00 a.m. along with pre-walk activities. Participants will walk on the 3/4 mile track with plenty of refreshments and entertainment provided before, during and after the event. For information or to register, visit www.lupus.org/walk or call 202-349-1161. For Manassas resident Stephanie Mahoney, her pursuit of a correct diagnosis that would explain her mysterious symptoms began in late 2004. Now, five years later, at age 32, she knows the answer is Lupus and she is on a mission to educate others as she learns to deal with this devastating disease. As a child, Stephanie''s parents took her to multiple physicians trying to understand why their toddler had unexplained hair loss. As a teenager she recalls having unexplained rashes, joint injuries and fatigue. As an adult she experienced repetitive miscarriages and a very difficult pregnancy and postpartum. It wasn''t until 2004 that Stephanie realized that not everyone ached and experienced joint pain continuously. As the pain and fatigue increased, she sought out the opinions of several physicians, all who suggested that it was just part of getting older or that maybe she had the flu. Some even suggested that her symptoms could be psychological. The pain became unbearable and she began experiencing stiff swollen joints, odd rashes, temporary paralysis, mental confusion, cognitive deficits, and auditory processing delays. At the point at which she was no longer able to function on a day to day basis, her physicians began to order more specific tests. Initial lab work still did not reveal a definitive answer and she was told her symptoms were the result of Undifferentiated Connective Tissue Disease, Arthritis, Polyarthralgia, and Fibromyalgia to name a few. It wasn''t until she sought out a physician at one of the top university hospitals in the nation, that she was finally given a correct diagnosis. Even though an answer had finally come for Stephanie, "finding out that I have an incurable disease was saddening. As I researched Lupus and discovered just how much is unknown and how few drugs are available for treatment, I became angry, depressed, and scared". She reluctantly took the medications that were prescribed and believes that she has experienced a short period or two of remission within the past several years. With her Lupus still not well controlled Stephanie''s illness has become debilitating. She now has permanent nerve damage or peripheral neuropathy as well as several other conditions that commonly occur in persons diagnosed with Lupus. In addition to the disease itself, many of the medications currently prescribed for Lupus management have side-effects that can cause a whole new host of problems. "Living with lupus has been a blessing and a curse" says Stephanie. "For quite some time I struggled with the loss of myself. I have struggled with the fact that my daughter will never know the old me, the person who ran and played, the person who could work and provide. She will not know me as a person who could grocery shop without becoming so exhausted and needing to rest while still in the store. Or the very active person I was who could follow through with a commitment. The person who had a choice of when to sleep and when to be awake. Living with a chronic illness that you know no one else can relate to can be very isolating". Lupus has many unseen complications and has been referred to as an invisible disease. "I often times do not appear ill. Even when I have lost my hair and have an altered gait, people still expect me to perform the same," added Stephanie. Stephanie is thankful though. She feels as though she has been taught valuable life lessons that no other person could teach. She feels as though she now knows what is most important. She no longer takes each day for granted and has a new found appreciation for the simple things in life. "I have accepted that I can''t expect anyone to understand what it is like to live with Lupus. Each person with Lupus is unique; there is no set guide or expected path. Realizing that has given me the freedom to share my experiences with other people in hopes of spreading awareness." Stephanie has formed a team, Butterfly Kisses,that will be attending the Walk for Lupus Now event in Richmond, Virginia next month. The goal for the Richmond Walk for Lupus Now is $50,000. “While we are aware these are difficult economic times, lupus knows no difference and people affected by this chronic and disabling disease continue to need our help. Researchers also are depending on us keep building momentum toward finding a cure for Lupus, which affects an estimated one in 200 Americans,” said Terry Sanders, National Walk Director for the Lupus Foundation of America. People often walk "in honor" of a friend or family member who has lupus or "in memory" of someone who lost his/her battle with lupus. They are joined by hundreds of caring people who walk as individuals or as part of a team to raise funds to bring an end to this life-diminishing and life-threatening disease. An estimated 1.5 million Americans have a form of Lupus - an acute and chronic (lifelong) autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body. Its health consequences may include heart attacks, strokes, seizures, or organ failure. More than 90 percent of the people with lupus are women. Lupus is two to three times more common among African Americans, Hispanics/Latinos, Native Americans, and Asians -- a disparity that remains unexplained. The LFA is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for Lupus, and providing support, services, and hope to all people affected by the disease. Founded in 1977, the LFA has a nationwide network of nearly 300 chapters and support groups and operates programs of research, education, and advocacy. ### For additional media information, please contact Terry Sanders, Lupus Foundation of America, 312-550--7110 or sanders@lupus.org

My Friends

Health Diaries

KissedByAButterfly's Health Diary

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Public Health Profile


I have Lupus anticoagulant disorder	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Discoid lupus erythematosus of face	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Discoid lupus erythematosus of mucous membranes	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Acute and chronic gastritis	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Systemic lupus erythematosus	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Discoid lupus erythematosus of scalp	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Polyarthritis associated with another disorder	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Rheumatoid arthritis with multisystem involvement	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Poorly functioning gallbladder	Currently Feeling

I am currently feeling:	not well at all	very good

Removed due to lose of function. Negative for stones. Chronic inflammation.

Diagnosis date not specified


I have Autoimmune thyroiditis	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Bursitis of hip	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Disease related peripheral neuropathy	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Degeneration of cervical intervertebral disc	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Trigeminal nerve inflammation	Currently Feeling

I am currently feeling:	not well at all	very good

This is the worst pain I have ever experienced!

Diagnosed 2 years ago


I have Migraine	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Alopecia areata	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Chronic constipation	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Chronic diarrhea	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Bell's palsy	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I have Disorder of the peripheral nervous system	Currently Feeling

I am currently feeling:	not well at all	very good



Diagnosis date not specified


I take PLAQUENIL	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take IMURAN	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: NO


I take PREDNISONE	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take TRAZODONE HCL	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take TYLENOL/CODEINE #3	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take GABAPENTIN	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take CLONAZEPAM	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Start date not specified End date not specified		Recommend: YES


I take BONE MEAL/VITAMIN D	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe

2000 IU Vit D daily +100,000 IU Vit D weekly

Start date not specified End date not specified		Recommend: YES


I take PRILOSEC	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Started: 02/17/2010 End date not specified		Recommend: YES


I take KENALOG IN ORABASE	Overall Satisfaction

My overall satisfaction is:	very low	very high
This medication worked:	not at all	very well
The side effects were:	very mild	very severe



Started: 02/17/2010 End date not specified		Recommend: YES


I use a(n) Wheelchair, Manual	Overall Satisfaction

My overall satisfaction is:	very low	very high
Comfort and fit:	not at all comfortable	very comfortable
Weight:	very heavy	not at all heavy
Initial cost:	not at all affordable	very affordable
Ongoing cost:	not at all affordable	very affordable
Ongoing maintenance:	requires a lot	requires very little



Started: 10/15/2009 End date not specified		Recommend: YES


I have the symptom of Facial numbness	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Hand numbness	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Numbness in Both Feet	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Aches	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Back muscle pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Back pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Bone pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Dental pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Hip pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Jaw pain	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I have the symptom of Burning feet	Currently Feeling

I am currently feeling:	not well at all	very good



Start date not specified End date not specified


I went to Prince William Hospital	Overall Satisfaction

My overall experience was:	not at all pleasant	very pleasant
Wait time:	very long wait	no wait time
Cost:	not at all affordable	very affordable
Cleanliness:	not at all clean	very clean
Competency of the staff:	not at all competent	very competent
Knowledgeability of the staff:	not knowledgeable	very knowledgeable
Bedside Manner:	not at all pleasant	very pleasant



Admission date not specified Release date not specified		Recommend: YES


I went to Prince William Hospital	Overall Satisfaction

My overall experience was:	not at all pleasant	very pleasant
Wait time:	very long wait	no wait time
Cost:	not at all affordable	very affordable
Cleanliness:	not at all clean	very clean
Competency of the staff:	not at all competent	very competent
Knowledgeability of the staff:	not knowledgeable	very knowledgeable
Bedside Manner:	not at all pleasant	very pleasant



Admission date not specified Release date not specified		Recommend: YES


I went to Prince William Hospital	Overall Satisfaction

My overall experience was:	not at all pleasant	very pleasant
Wait time:	very long wait	no wait time
Cost:	not at all affordable	very affordable
Cleanliness:	not at all clean	very clean
Competency of the staff:	not at all competent	very competent
Knowledgeability of the staff:	not knowledgeable	very knowledgeable
Bedside Manner:	not at all pleasant	very pleasant



Admission date not specified Release date not specified		Recommend: YES


I belong to HealthKeepers	Overall Satisfaction

My overall experience was:	not at all satisfied	very satisfied
Doctors:	limited choices	a lot to choose from
Specialists:	limited choices	a lot to choose from
Cost:	not at all affordable	very affordable
Customer service:	not at all satisfied	very satisfied



Start date not specified End date not specified		Recommend: NO


I have an allergy to Imuran	Allergic Reaction

My allergic reaction is:	not that severe	very severe

Rare, life threatening allergy!

Onset date not specified Recovery date not specified


I am interested in: Photography

Photography

Not so much any more!