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Experiences With Lupus |
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Experiences With Lupus |
Want to share your lupus experience with others? E-mail us your story and we'll post it here! Pictures welcome, but not required.
'People say I'm the picture of health. If they only knew how I'm suffering on the inside. I struggle with the pain and overwhelming fatigue of Lupus. And with the fear that I'll never be okay...that I'll be sick for the rest of my life.' (- An Unknown Lupus Patient)
Hi, my name is Shannon. I was diagnosed with Systemic Lupus Erythematosus in the beginning of 1998. I hope my story is not typical and that many people do not have to go through what I have to get a diagnosis.
I believe I have had symptoms since I was 16. When I first started going through puberty, I had terrible clotting with my periods, accompanied with cramps that gave me fevers and chills. I also would vomit and pass out at school. All the adults around me thought I was just overreacting. I started having a menstrual cycle when I was eleven. This continued and most doctors assured me that everything was normal. Other than the excessive pain (for which I was given muscle relaxants that didn't help) and clotting, I was normal. One doctor even told me it was part of being a woman and after I have a baby it would all magically go away. Hmph!
After I turned 16, my dad had made plans for my brother and I to stay with family visiting from out of town in Daytona Beach. The day before we left, I awoke and my right arm was numb - like it was asleep. I was scared and I didn't want to wake my mom. I got into the shower trying to wake my numbing right side of my body. I couldn't think straight and had a general feeling of haziness in my mind. After the shower, I laid back in bed and called my mom in. At this time I was having a bit of trouble talking. My mom worried calls my doctor's office. It is so early she that has to leave a message for the on-call physician. I was still in bed now accompanied by the worst headache of my life. I was sick to my stomach, with blinding pain over my left temple. My mom leaves me with my grandmother and goes to the store for emetrol (an anti-nausea) which the physician told her to get. I continued this way without any relief until mid-afternoon. Then suddenly I was fine, more or less. I was a little confused and disoriented, but I wanted to go to the beach!
The next morning we leave for Daytona and I don't remember a lot about this because my mind was affected by the occurrence the day before. At some point in the afternoon in Daytona after meeting up with my family, I went to sit in a hot tub and my right side of my body goes numb. I don't realize it until I try to get out. I hurry through the lobby to a phone to call my mom. I try to tell her the best I can (having problems communicating with speech). I remember her telling me to get my dad to take me to the hospital; I may be having a stroke. I find my dad and all I can say is I need to go to the hospital. We get to the hospital and I arrive with the headache and speech that made no sense. My dad tells the doctors I have taken drugs and am possibly overdosing. So they leave me in the emergency room and a nurse takes a urine sample to test for drugs. At some point they admit me or should I say Baker-acted me. I laid in a bed all night not being able to think straight or keep from vomiting. I can't see straight and I don't remember anyone ever coming to check on me. I had vomited all over the floor beside the bed. The next morning, I wake up in the psychiatric floor of the Halifax hospital near Daytona. They send me for a CT scan and EEG. They released me and my discharge papers said "migraines". I have come to believe they messed up and I did have a stroke and a few more before it was all over.
In 1994 I became pregnant and everything was fine at first. Then I started developing burning in my hands and feet. I didn't have insurance at the time, so my mom took me to a walk-in clinic. The doctor was stumped; he gave me a lyme test; it was negative. By the time I had got the results back, I had suffered an acute renal infection and suffered a spontaneous abortion, for which I had a D&C at 13 weeks gestation. I was devastated, but that was it. I was depressed for a time and then I got pregnant a second time in 1997. I started bleeding at 12 weeks and miscarried again. I had another D&C and after taking some medical information, a wise doctor at Tampa General Hospital gave me a blood test that confirmed I indeed had lupus.
Since then I have had another kidney infection, a kidney biopsy, a very risky pregnancy that lasted 32 weeks with a premature, yet otherwise healthy baby boy that surprised the doctors at 4.5lbs. I had to inject myself with Lovenox, an injectable form of heparin, the duration of my pregnancy. Then I had an emergency c-section because of my uncontrollable blood pressure. I had a few doses of magnesium to no avail. I had to have a blood transfusion because my platelets were so low. I have had one flare affecting my joints and by far that was worst than the discomfort of my pregnancy. My then two-year-old didn't understand why I couldn't pick him up.
I have daily headaches, vision problems, Raynaud's, hypertension due to nephritis, and chronic fatigue. I am not sure if anyone else is affected by this, but sometimes my skin hurts to touch it; all over my body I feel like I am one big bruise. Thank you for reading my story. I am not able to work and I really have no one around that seems to know what I am going through. I hope that maybe some one else won't go through the pain and unanswered questions I had to. I pray for healing for every one of us who suffers from this very sneaky and unfair disease. I used to have good days now more and more I have get-through days.
God Bless!
- Shannon
What a great web site. Hearing other's stories is so helpful.
I was diagnosed at the age of 23 in 1997. I was a model and an actress and had been on a well-known soap opera. I didn't really get sick until I was on a hike in the California Mountains. I felt this WHOOSH come over my body and in an instant I had a huge flare. I went to the hospital that night thinking I was having a heart attack. Turns out it was the first of my many episodes with pleurisy. So started my long road of treatment.
I was put on the usual; steroids, Plaquenil, and NSAIDS. I kept getting worse. I had many solu-medrol drips, which is a 1000mg dose of steroids every day for 3 days. They tried Imuran, made me sick. Tried Cellcept, made me sick. Finally I was put on Methotrexate. Started at 10mg, then 15mg, then settled at 20mg. Lots of hair loss, but it did start working.
Recently, I went off it because I wanted to try to get my eggs out for surrogacy. HUGE MISTAKE!!!!!!!!!! I fell back big time and now after six months, I am starting back on the Methotrexate. That is, after I had a kidney biopsy and found out Cytoxan would not be necessary. In the 6 years that I have had Lupus, I have not been well at all. My doctor is amazed that I have such an unresponsive case.
I feel I am on the right track now. I am also getting married this year, so I have to stay positive. POSITIVE THINKING really plays a huge role in well being.
I also want to tell everyone that I have gotten involved with the Lupus Foundation of America. They have lots of new people over there that are really trying to make a difference and take this disease to the front lines and make people aware. There are people out there that are searching for a cure, too. It's all happening now, so I encourage everyone to get out there and start being vocal.
Another good tool: If you have a hard time explaining to loved ones how you feel on a day-to-day basis, tell them to go to www.butyoudontlooksick.com and have them read the "spoon theory". It's amazingly helpful.
- Kelly
This site has been a blessing. I was diagnosed in 1997 at the age of 25. Reading the site, I've come to realize that I have probably had this for years.
As an infant, I was allergic to milk products, eggs, and chocolate. I had pneumonia 3 times before the age of 10. At 11, I was hospitalized for cysts on my ovaries. About 2 years before my diagnosis, I went to the emergency room for a lot of lesions that were mainly on my hands, legs, ankles, and lower back. They hurt quite a bit and were oozing. I was given antibiotics and cream without really ever knowing what the problem was. About a year later is when the rash appeared on my cheeks right under my eyes. I went to my family doctor (after about a year of having the rash) and after one look at me, he said, "I think you have Lupus" and referred me to a dermatologist. He did a biopsy of the rash and blood test and I was diagnosed.
I wanted to put my story out here so that if someone reads this and notice some of the symptoms, they can seek help right away.
I started taking Plaquenil but it made me so sick that after even reducing the dose, I quit all together. I have not taken any kind of medicine in over 5 years. I plan to go back to the doctor now that I have moved to a different state as I am starting to have more joint pain and fatigue.
Just wanted to thank you from the bottom of my heart. This is the 1st day that I've visited, and have learned more here and from Shar at ButterflyNewsBytes than anywhere else.
God bless, Lupies. He has something special in store for us. Have A Blessed Day!
Love and good luck to all,
Your Lupie sister, Nikki
Hi, my name is Maryan. I have had lupus for over 20 years, but never knew until 12 years ago when I started having grand mal seizures.
I guess it all started when I was getting married and had to go through the "pre-marital" blood test. Mine came out positive for syphilis (I thought to myself "That son of a b---- gave it to me" but his was fine. I asked the nurse, "Where did I get it from", and she looked at me and said, "Your asking me? You should know how this happened!!" I refused treatment and it was noted on my record. A few years later I started working at a hospital and had to go through a pre-employment physical with blood work. A few days later I got a call to go to the public health office where I was told again that I had syphilis. I explained to them what happened when I was getting married and the nurse told me that I must be a "false positive".
Three years later when I was pregnant with my son, a lot of "weird" things started to happen to me. I was having panic attacks, and I always felt that I was getting the flu. My body hurt and ached for no apparent reason. I really thought that I was going crazy.
After having my son is when everything went crazy. My legs swelled up like balloons and for a while I couldn't walk. My hands were so stiff and my hair started falling out. My OB doctor told me that it must have been from my hormones. This lasted for about 6 months and then mysteriously disappeared.
Five years later I was pregnant again and started having grand mal seizures. I went to the doctor and again the syphilis came up. I explained what happened years before. They did some tests and told me that I had lupus.
But, after I delivered, my ANA was OK again so they chalked it up to the pregnancy. I continued to have the seizures at least 3 times a month. I started seeing a neurologist and he put me on anti-seizure medicine that did not help at all. He would continuously do blood work and was stumped because my white blood cell count was always elevated. After months of this, he finally told me there was nothing else he could do. The seizures continued and I finally had to stop working because I would have them at work.
My internist thought the seizures were hormone related, so he started me on depo-provera to put me into post-menopause to see if the seizures would stop. They did stop except for small petit mal seizures, which I could handle. He then suggested me to have a total hysterectomy, which I agreed to, because in the past I had 3 miscarriages and I knew I couldn't go through anymore of this.
About 3 months after my surgery, my doctor noticed that I was bruising quite a lot, so he wanted me to see a hematologist. He took my history and ordered a CT scan, which showed I had a blood clot in my pelvic area. I stayed in the hospital for 7 days and received Heparin. He then was talking to me more about my symptoms. He ordered more blood tests and the results came up positive for lupus cerebritis and also Anti-Phospholipid Antibody Syndrome.
So, now I take coumadin every day and will have to take this for the rest of my life. I also take 2 seizure medicines (because I still continue to have petit mal seizures), plus hydroxychloroquine (Plaquenil - lupus medicine). Sometimes I have to go on the prednisone (which I hate), and have also developed high blood pressure, so there are 2 more medicines. My cabinet looks like a pharmacy.
I continue to have bouts where I feel disorganized, forgetful, and in a haze. I also continue to have "rashes" on my arms and hands that leave scars. I have numerous bouts with pneumonia and shingles. Sometimes I feel very uncoordinated and lose my balance a lot. There is one episode where I can't remember 6 months of my life.
I am now on disability because of the seizures. I can't tell you how many times people have said to me "Why are you on disability? You don't look sick to me." If they only knew how I feel on the inside. I am so sick of going to doctors but at least they know what is wrong with me now. I have to see a neurologist, rheumatologist, and hematologist.
Good luck to you all.
- Maryan
I was diagnosed 20 years ago with lupus, Raynaud's phenomenon, rheumatitis, Sjorgen's syndrome, and scleroderma.
I was diagnosed last year (2002) with vasculitis. I was in the hospital off and on last year. I had to have three fingers on each hand amputated and a toe amputated. My fingers got gangrene. Luckily, my toes were saved except the right one. Three of the toes auto-amputated.
I don't think I would have made it if it weren't for my family. My husband is the greatest man there is as far as I am concerned. He is not only my husband, but also my best friend. My family has been so helpful to my husband and me. Our daughter has had to handle quite a lot for a 14-year old.
I know it can be very hard at times, but you have to try and take it one day at a time.
- Chris
As a member of the Lupus Foundation of America, I had the privilege of participating in Lupus Advocacy Day in Washington, D.C. It was quite an honor to meet Congressman Richard Aderholt , Edwina Rogers, Counselor on Health Issues for Senator Jeff Sessions, and Richard Shelby. Senator Shelby graciously took time out of his busy schedule to meet with me personally and allowed me to express both my concerns and interests in finding a cure for Lupus. The Lupus Foundation of America is striving to raise awareness of the disease, support for those challenged by it, and funding for the research needed to eradicate this disease.
A beautiful gala was held at the Ritz-Carlton Hotel where I made many new friends, some of which, are well-known celebrities. Lupus affects 1.5 million Americans and does not discriminate among races, economic status or gender. It does affect more women than men and is a disease of the immune system. In effect, the body attacks itself and predominately affects the lungs, heart brain, kidneys and skin. It has been 30 years since any new medicines have been approved for treatment. Currently, there is no cure for Lupus. It is my desire to see that change in the very near future.
I wanted to share my experience for many reasons. First off, the President of my company, a sales representative and a friend from my office allowed me to use their personal travel awards points for my hotel accommodations. Another friend contributed her frequent flyer mileage points toward my airline ticket. Many friends wished me well and extended their support for my efforts on this trip. It was my desire to become acquainted with other people who are afflicted with my disease and to express the voice of one with Lupus to our congressional leaders.
If you don't have Lupus, chances are you know someone who does. We need to work harder to find a cure and I think my trip to Washington, D.C. was a step toward that goal.
- Denna
My name is Jessica, and I am 22 years old. I was diagnosed with Lupus when I was 13. Like many of you I have had my share of obstacles this "relentless" disease has had to offer. When you are diagnosed with something like this at such a young age, childhood seems to slip away and you are hurled into an adult role that you are too young to comprehend. My mom and dad always did say that I wanted to grow up too quickly, so at 13, I got my opportunity to show the world just how grown up I could be.
Lucky for me, God gave me the best parents you could ever ask for. I probably don't tell them enough how much I appreciate their love and support, but they are a large part of my success with Lupus, and my everyday life as well.
It didn't take long for me to understand what my role must be after I was diagnosed. My mother, a very tender hearted and emotional lady, was overwhelmed and cried frequently thinking my healthy life was over. I always tell her she needs to drop the negative way of thinking, and jump on my positive bandwagon. I guess some things will never change. My dad, the laid-back type, just looked helpless. So, I did what I had to do and what I have continued to do since; I put a smile on my face for the world and continued my life without hesitation.
Lupus has knocked me down a few times physically and emotionally, but nobody needs to see my pain. Like everybody else, when it is too much to deal with and I just can't hold in the tears, I let go (in private, of course). Weakness, is not a word anybody that knows me associates with my personality, and I want it to stay that way. If you met me on the street you would never even have a clue that I'm sick. I guess you could say I'm a fly by the seat of my pants kind of girl. Life has so many tragic details that it is easy to forget how great it is to be alive.
Many Lupus patients I have met tend to wallow in self-pity, and they are always sick. They constantly worry about the disease and what horrible things are yet to come. Not me though, and I am living proof that keeping a positive mind set is the only guaranteed "treatment" for this disease. Now, I can say that my carefree lifestyle has at times gotten out of hand. I've always lived for the moment, not tomorrow. My parents do blame their gray hairs on me, but have always been there to save me when I lived life up just a little too much.
I will confess over the years I did pick up a few bad habits such as smoking and drinking. I even tried the drug scene from marijuana, cocaine, to methamphetamines. Drugs were the ultimate bad decision, although they had no affect on my Lupus, my parents were there to help me see the error of my ways. I guess all those crutches I found along the way were my way of dealing with stress and emotional pain in silence.
I'm not super girl, and I have gotten angry at times when society treated me different. Being 18 years old, 30 pounds overweight from, (every woman's nightmare), steroids and baldheaded was a major turning point in my life. It might sound strange, but I'm glad I got to see the world from that angle. It taught me a lot about people and how shallow most of them are. And I'm a better person now.
This is how I try to maintain my positive perspective after you overcome each obstacle. Try to pull some sort of life lesson or reasoning out of the experience. It helps me gain an understanding that is sometimes hard to find, but reminds me how strong I can be mentally and physically. With this headstrong type of attitude, there is nothing you can't overcome. Live everyday of your life like it could be your last. Travel, paint, fall in love, just do what makes you happy, and when you start feeling down or self-pity remember: IT CAN ALWAYS GET WORSE!!!
You'd be surprised at how selfish you can feel after listening to somebody else's problems that are more severe than your own. I hope this helps anybody who has struggled with emotions or wondered how to go on with your life after being diagnosed with a disease. Keep your head up and remember to smile!!!
"Society does not judge who you are by the unfortunate instances that happen in your life; their judgment comes from observing how you deal with each situation." - Jessica
Hi. My name is Jennifer. I am 18 years old and am diagnosed with Systematic Lupus and Vasculitis. I was 12 years old when the systems started affecting my body.
First it was my vision getting blurry and, to a point, was completely blind in both eyes. I had to go through a battery of tests: angiograms, biopsies, spinal taps, MRA's, bone densities, and tons of blood work. I was put on 250 mg of prednisone through IV plus 30 mg by mouth. I was also getting chemotherapy treatments daily. I had severe back spasms and pains, which were found to be caused from the large dose of prednisone. The pain was fractures to my spine, which led me to not being able to move or walk. I was told I would never be able to walk again. I went through physical therapy and I gained all my strength back so I could walk. I was diabetic for a few months, but it is normal now.
I spent the ages of 12 and 13 in the hospital where my parents could not spend the night and stay with me. So, if anything unexpected happened, I was on my own until my parents where contacted. It was even harder on my dad because he lived in a whole different state altogether. I missed a year of school and had to catch up when I did not feel sick or depressed. My body was physically damaged in ways; my kidneys shut down and my antibodies were getting attacked.
Now I have been in remission for 6 years now and as healthy as anyone else. I am still taking prednisone, but only 10 mg every other day.
Someday, hopefully, they will find a cure for Lupus. Getting Lupus has made me a much stronger person and has made me look at people who are sicker than I had gotten and how they may feel. Being alive today lets me think of everything in my life that I do have.
- Jennifer, Georgia
Due to space, the owners of this site reserve the right to edit content of stories submitted to The Lupie Bin. All effort will be made to keep said submissions true to form and content. The owners of this site also reserve the right to reject any submission for posting to this site. This site is owned and maintained by The Lupie Bin. All stories contained within these pages are the © copyright of the author and used here with the express consent of each individual. Please note that neither I nor the individuals sharing their lupus stories are physicians. This area of The Lupie Bin is provided strictly for the purpose of sharing our experiences and feelings with one another as a means of support and validation. The opinions expressed here are strictly those of the person who gave them and should be treated as such. Lupus is a disease as unique as each individual and only your doctor can know what medications and treatments are best for you. Follow the directions of your own personal physician and ALWAYS consult your doctor before changing or discontinuing any treatments or medications. Thank you.
