|Experiences With Lupus|
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'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)
Click on a name below to read that Lupie's story
Hi, my name is Shayla. Iím 16 years-old and when I was 11 years-old, I was diagnosed with lupus. Doctors told me that they didnít usually see lupus in people my age and besides that didnít have very many answers. No answer for why I have it, how it came about, or what lupus would have in store for me.
For years I didnít take lupus seriously. I was supposed to be on medication for a period of time but, because of the negative effects it had on my stomach and weight, I stopped.
For a long time my lupus was dormant and I didnít think anything of it. Then one summer morning when I had stayed at my friends house I woke her by kicking her. She didnít know, but I was having a seizure. I continued to kick her so she tried to talk to me. When she realized I was unresponsive and something was wrong she began screaming for her dad. Luckily her brother ran in and saved my life by pulling vomit out of my mouth that I was choking on. I got to the hospital and had another seizure. For two days I went through extensive care. For the next seven months I had to go into the hospital and get infusions. I have one infusion left!
Going through that experience I will never be the same. I realize now how serious lupus is and now Iím learning to cope. I enjoyed reading the stories on here because I know Iím not alone.
I hope someday there is a cure and no one has to go through what lupus provides.
Be strong everyone.
Iíve always been active and athletic; full of energy. When I was younger, I was always running around outside, riding my bike, rollerblading, kicking the ball around with the neighbor kids, camping. When I was four, I was hospitalized two weeks with a severe kidney infection. I had to undergo a cystoscopy and, then, frequent testing for about a year afterward. Iím still uncertain as to what that was all about but, my mother assures me it wasnít anything to be concerned about.
My younger brothers contracted chickenpox when I was 14. They had no problems and their cases came and went with no complications. I caught their little bug but, my lesions turned black and spread to my lungs and I was hospitalized with pneumonia.
When I was a teenager I started having convulsions. Numerous MRIs and EEGs later it was determined I had temporal lobe lesions and I was diagnosed with epilepsy. The seizures also coincided with behavioral issues which included memory lapses, severe depression, violent mood swings, and insomnia. I was also diagnosed with bipolar I disorder. I was heavily medicated with Depakote and lithium. I left school in my senior year, home schooled myself and received my high school diploma on my own.
A week after the birth of my son, I became seriously ill and needed to be hospitalized for two days. I developed a high fever, lesions in my mouth and in my throat, and rash on my face that soon spread to my torso. My lymph nodes were so enlarged that I could not swallow. My joints were hot, stiff, and swollen. At the time, I was diagnosed with a ďvirusĒ, kept for observation, and then sent home to rest.
When I was 19, I had mononucleosis. I was pretty ill with it. I was a single mother, though, and could not take time off from work to recover. I worked through my illness. It took four months for me to feel well again.
When I was pregnant with my second child, I was ill and fatigued during the entire pregnancy. At 32 weeks, I had to be induced due to pre-eclampsia and acute renal failure. The mysterious ďvirusĒ, complete with rash and all kept returning over and over again after the birth of my second child. Only now I was in constant pain. My seizures were not under control.
When I was 25, I was running about 6 miles every other day, doing yoga every night, and working double shifts to support my children. I started to notice that I was not physically able to get into my yoga positions anymore. I had to cut down my hours at work because I was too tired to work. My fevers were more frequent. I had sores in my mouth. I couldnít go outside to run unless it was dark or overcast because it was like I was allergic to the sun. Then I stopped running altogether because I noticed that my toes were just not straight anymoreÖthey were twisted. Same with my fingers. My left hand was becoming contracted, in fact.
I started nursing school in 2007. I had trouble sitting through class because of back pain and leg spasms. A few times I fell down while walking. I even sprained my ankle and ended up on crutches for two weeks because I fell down the steps when my legs gave out on me. My neurologist did more MRIs of my brain and spine to look for more lesions. He told me I may have MS, but that all came out negative.
One day in September of 2009, my boyfriend couldnít wake me up. Again, I had a high fever, my face was covered in that rash, I had hives on my torso, lesions in my mouth, and my throat was almost completely closed due to swollen lymph nodes. I was rushed to the hospital once again. He gave them my history and told them I was tested for MS. The ER doctor decided to run an ANA titer on me while I was there. It was positive.
My son was ill at the time, so I didnít do anything about this test result when I found out. I knew what it meant, of course. I spent some time making sure my son was well, then I decided to see a rheumatologist. I found out I had RA, Rheumatoid Arthritis, which was pretty obvious by the destruction of my joints. The doctor ran his own ANA, Sed Rate, etc., but wasnít satisfied enough to make a diagnosis of lupus at that time because my ANA was negative this time around. At my second visit, though, he determined that I met the criteria, that my ANA was positive before, and that was going to be my diagnosis. He started me on Plaquenil and I began a long process of trial and error with different meds, including steroids and methotrexate.
So, I have RA. I have lupus. And stage 4 endometriosis, which has required 3 surgeries so far to get temporary relief, but it isnít FIXED - but thatís another story.
I wrote this for Lupus Awareness Month. And as kind of a therapy for myself. If you took the time to read it, thank you. I try to be a positive person, and I know I complain a lot, but damn it, itís so hard! Itís hard not to think about something that has so completely changed who you are and stopped you from doing the things you were once able to do. I canít bear to hear people tell me not to let it stop me. How can I? Itís not mind over matter. I wish it was.
I once had someone tell me that all I do is feel sorry for myself. Well, I do feel a little sorry for myself. Arenít I entitled to once in a while? Itíd be totally delusional to pretend nothing is wrong. But, I do try to be positive. Iíve always wanted to be a nurse. I know what itís like to be in pain, and I can tell when someone else is in pain. It makes me feel good when I can ease someone elseís discomfort. I think my illness has positively influenced me in that way. Also, itís made me pretty tough. Iíve been through a lot and I can take a lot. And Iíve learned to appreciate what I have in life.
One more thing - I love everyone in my life who supports me. I know how hard it is to live with this and it has to be hard to be there for someone like me. My loved ones are some pretty special people, the best there are. I thank God for them every day.
~ Mindy K.
Tara's story is unusual in that Tara did not send her story to the Lupie Bin. Tara and I were friends, and we talked about her writing up her story to be posted on the site. Unfortunately, she never got around to writing her story. Tara passed away October 2, 2008.
The word amazing is so overused these days, but frankly, there just isn't any other word that describes Tara better. Everyday was a battle for Tara - one that she faced head-on, courageously, and without complaint. Tara had several chronic illnesses, not the least of which where Systemic Lupus Erythematosus and Pulmonary Arterial Hypertension. Rather than see herself as a victim to these diseases, Tara chose to be an educator, taking the opportunity to enlighten anyone on the subjects of SLE, PH and other diseases. She was quick to hand you an educational wallet card and a homemade awareness ribbon. When her health would allow it, Tara would attend seminars/conferences on the illnesses that affected her, learning as much as possible and then sharing everything she learned with anyone she could.
Tara was very active online as a member in several support groups - SLE and PH - as well as maintaining her own informative MySpace page. Perhaps the most important website she managed was the one in which she demonstrates exactly what living with Pulmonary Hypertension is like. She boldly reveals the ins and outs of maintaining a Hickman catheter, living on oxygen 24/7, multiple medications, opportunistic diseases, side effects, and much more. Through all of this Tara kept a delightful sense of humor, nurtured and expressed her creative side by making beautiful jewelry and homemade bath products, kept up with friends, and much more than can be mentioned here. Tara had a bounty of family, friends and pets who loved and greatly admired her. It's difficult to let Tara go, but we rest in the knowledge that she now breathes easy and is peacefully pain free.
As there is no "story" for Tara, I leave you with the links to her websites. After you have read them, please pass them on and help Tara continue to teach others.
SuperLupus - Low
MySpace - Tara is SuperLupus!
Breathe easy, Friend, breath easy. ~ Julie
Hi, My name is Samantha and I am 20 years old. I was diagnosed with Lupus when I was about 15 years old. It all started one very hot summer. I was always an active girl played softball for about 8 years of my childhood, always outside, sports, friends, being a kid until it was all interrupted.
I started getting these itchy, bumpy, red rashes all along the right side of my face, for weeks. All I thought was that I had a severe case of sun poisoning, because I had been playing and practicing so much lately in the hot sun and I was never one to wear a hat. I always welcomed the sun happily, sunburn or not. I went for quite some time treating my rashes as if they were sunburns, never thinking or caring, going along as if it were normal. During this time I had been using a tanning bed as well and noticed that every time I would finish tanning the top of my head would itch terribly. Again I ignored it. Until one day I was brushing my hair and just for the sake of curiosity looked at my brush, and noticed that there was a more than normal amount of hair in my brush, as well as in the shower. I reached up to scratch my head and as I pulled my hand away I noticed that there were several strands of hair intertwined between my fingers, all still had their roots attached. For the first time I noticed I had an abnormal sized bald spot on the top of my head. It was then that I knew something was wrong.
But I was young, didn't have care in the world, and it was summer - I had softball to worry about. One day my father accompanied me to an out of town game and again with no hat or sun block, I played in the scorching sun for 3 hours. With the pass of every inning, I noticed my face getting hot, burning, and more red by the minute and my head was itchier than ever. I tried to ignore it throughout the game, but even team mates noticed. I was weak and tired and constantly answering "Iím fine, I can finish," to the question, "Are you ok?" and "You don't look so good."
Finally the game ended and all I could think about was getting out of the sun. When I finally got home, I couldn't do anything but break down in front of my family. I began to cry; I didn't know what was wrong with me or why any of this was happening. I was depressed, and being out in the sun wasn't helping. My mother made an immediate call to a doctor the next day.
Within a day or so, I had an appointment with a local dermatologist. I had never gone to one before, and I was scared and excited at the same time. When he saw me he sat me in a chair in the middle of the room, looked at my face, proceeded to tilt my head down to see my bald spot, and with out a single moment of thought looked at my mother and said "Does lupus run in your family?" I hadn't a clue what that was but I remember my mothers words, "Yes, my grandmother had it." It was then that he decided to do a biopsy and took a skin sample from the bald spot on the top of my head. It was a few days later I was diagnosed with lupus.
The doctor had given me some cream to diminish the rashes on my face and a solution to help my hair grow back. I had gotten used to wearing hats for weeks and when I couldn't, I figured out how to do my hair so the bald spot wouldnít be seen. Eventually the school year came around and trying to explain to kids why I was balding at such a young age was a nightmare and very depressing to say the least. Finally, my hair grew back and all was fine.
Over the years, I've noticed that I get pains in my joints, mostly on the right side of my body, particularly in my hip, knee, wrist, and elbow and especially when I'm cold. I still get rashes every now an then and most recently a bad rash around my chin and mouth that comes and goes. It itches badly, gets dry and scars more and more every time. I'm also starting to lose my hair again, in a different spot.
I'm in a bad position at the moment. I haven't had any treatment since I was about 16, have no medical insurance at the moment, and was laid of from my job 2 months ago. Iíve seen my family doctor once or twice, but there is nothing he can really do for me, I need to get blood work done, and a urinalysis to make sure my kidneys are OK. We've been calling insurance companies all over the place, unfortunately they can't do a thing for me. My dermatologist will no longer see me because I have no insurance, so things have been bad lately. I desperately need treatment, its been way to long, and I put it off. I thought I was invincible for so long and in denial for even longer, and realized a little to late that I need help and medicine.
My name is Anna. I am fifteen years old. I'm a typical teenager; I enjoy hanging out with friends, listening to popular music, and obsessing over my make-up. What isn't quite so obvious or typical about me, is that I have Lupus. I am a Lupie. Quite a cute, little name for something so far from being cute and little.
I first heard about this disease when I was very young. My babysitter had it and told me so. I was a young child, so I didn't pay much attention. In fact, I told my friends that my babysitter had "Loops" disease. Little did I know, this disease would soon become such a large part of my life.
8th grade was quite a time for me. I was in the middle of a "punk" phase, where I constantly yelled at my mother, wore black eyeliner and dressed in all black. I had my heart set on being "rebellious".
November of that year, I went to the hospital because of a throat infection, and they ran their standard blood tests. I got a call from my doctor the next day or so saying that I had low platelets and that I needed to see a specialist. Platelets help clot blood and they are necessary for good health.
Now, being the lazy kid that I was, I didn't see what the big deal was and I didn't go. I figured it didn't sound urgent and I had better things to do. I had no idea that the situation was as serious as it was. The average healthy person has a platelet count of 150-450k (approx.). When my doctor called me, he said my platelet count was 21k. I was bruising ridiculously easily, but I felt fine, so for the next month or so I continued ignoring everything.
Then sometime near the end of December I noticed that my legs were completely covered in tiny, tiny red spots. So tiny, in fact, that from far away you wouldn't notice their presence, but I noticed them. I noticed them and didn't care, "Ugh, I bruise so easily," I thought to myself. A few weeks after that, I was in drama class when my friend pointed to my arm with a worried look in her eyes, "What is that?!", she asked me. I had no idea what she was talking about, until I looked at my arm. There was a bruise on my forearm, if you can call it that - it was raised like a giant bump, and it was massive. I assumed I banged my arm against something so I went down to my school's office to get some ice.
The school secretaries looked at my arm and all reached the conclusion that whatever was happening with me wasn't normal and that I should leave school to see a doctor at once. So I went with my mom. The doctor looked at my arm, ran some blood tests and told me I was fine and that I could go home. I figured he was right, I mean, I felt totally fine, why should it be anything serious? I got home and my mom was still not convinced I was okay. She decided to mark the bruise on my hand and told me if it started growing that I would go to the emergency room. "Okaaaaaaaaaay", I told my mom as I rolled my eyes. 11PM - my mom looked at my arm. The bruise grew. I was off to emergency.
I remember the emergency room so vividly. There wasn't much of a line and I was seen fairly quickly. I explained all of my symptoms to the doctor and they took some blood from me. Unfortunately, the main doctor who was looking after me said aloud that they had to check my blood for Leukemia. Time-out, time-out! Leukemia?? The cancer?!?! I was scared out of my mind. I kept my cool for a little bit, but eventually I was sobbing. I was so scared, it was a really difficult evening. The doctor finally came back and told me that I was okay and had a common condition, something I can't remember. So they said I should stay the night to get treatment. Naturally I did.
A day later - no progress. 2 days - nothing. Something else was wrong. It took about a week and a bone marrow biopsy to completely rule out cancer and for the doctors to determine that I did in fact have lupus. I was happy with this diagnosis. As weird as it is, at that time I didn't care. As long as I was gonna live, I was happy.
Since my diagnosis about a year and a half ago, I've had kidney involvement (nephritis), and I have arthritis - a lot for just a teenager. On top of all of that, I've become a little bit hysterical over my health. As I sit now I have pain in my arms, underarms and chest, and I'm wondering if it's a lupus flare. Every time I have any sort of pain I feel the need to see a doctor that very minute to make sure I'm okay. It's slightly ridiculous, but lupus is one challenge after another. You learn to live life by the day. Sure it isn't easy, but it's manageable.
I think the one message I have to anyone...I don't want to say "suffering" because that isn't the right word here...the one message I have to someone experiencing the effects of Lupus, is that it may seem horrible but there are many worse things out there. You have to think positively, keep your chin up, and smile. There are so many things to smile about. Don't let Lupus shape your identity, but let it be part of it. Just another thing that makes you, you. Don't be ashamed, don't be dismayed, don't get angry over it...accept it, and love yourself. You are the best you that there will ever be. Yeah you have lupus, so what? No-one's perfect.
JO BETH'S STORY
Jo Beth's story isn't typical, but is a different approach to the telling of her "story". Her website IS the story! Check it out at www.Job-ette.com. A story well worth the read in a clever and often witty website format.
I definitely had SLE from childhood. I was not diagnosed, but I was sick often, and when I was seven my doctors were testing my SED rate weekly for a few months because it was elevated and they were worried about my health. Eventually my SED rate lowered and 'the big scare' was over. My parents were horrified--they were told I could have various diseases.
Throughout my teens, and especially in my early twenties, I suffered the typical malar rash, and the awful constant fever that rarely goes away. I secretly wondered if everyone was sick all the time like me. I felt tired a lot--got sick a lot--developed a horrible rash after taking echinacea (it all makes sense now!) and I suffer from Raynaud's Phenomenon.
My husband and I are both very active and enjoyed taking hikes in the canyon. However, for days afterward I would be sick and fatigued. The sun would deplete my energy and make me sick, literally. Friends and family thought I was just sun "sensitive." I had no idea what an indicator this was!
I was finally diagnosed last year after suffering from severe chest pains accompanied by joint pain and a pronounced malar rash. I had to get a second opinion, and the rheumatologist confirmed that I had SLE. I must admit that I fought diagnosis, even though I knew deep down that something was/had been wrong for a long time. On the other hand, being diagnosed with SLE was almost a relief--I had known for years that I had health problems, and endured the "oh you are just thin and get sick" or "you are a hypochondriac" comments for years.
I find that it is hard to explain this disease to anyone--especially since I barely understand it. The pain I experience ranges from mild to severe, and the cache of medicines I take (prednisone, pain pills) will never completely cure me of this disease. I just try to make healthy choices, get rest, and maintain a pragmatic outlook on what I can and can't do.
My name is Sandi. I'm 43 years old. I was diagnosed with Lupus four months ago. I've known for a long time that it would probably be in my life, even though I really didn't have symptoms for nearly 22 years.
In 1982 when I applied for my marriage license, I had a false positive syphilis test. I was young and innocent and just got the darn Penicillin shot, even though I knew I didn't have a STD. The more specific tests hadn't been developed yet anyway. A few years later, I did ask a doctor about it and he said that someday I would probably end up with a connective tissue disorder, like Lupus. I put that thought on the back burner and went on with my life. I had three children and absolutely no health problems until 1998. At that time, I was diagnosed with ITP (low platelets). I treated with Prednisone multiple times which always worked, but I, like most, couldn't stand the side effects. My counts were as low as 3, but I adjusted well to this disorder and didn't let it stop me from working full time and being a busy Mom. ITP really didn't phase me much at all. I knew it wouldn't kill me.
In 2003, my counts were down again and I asked my hematologist about treating with Rituxan. I was hoping to avoid the steroid side effects. He agreed and we began the treatments. After my third treatment, I developed serum sickness, which was misdiagnosed by an ER doctor as a virus. I responded well to Rituxan and had a year of ITP remission. The following year I had Rituxan once more and again developed serum sickness, which was properly diagnosed this time. The problem was that I never really recovered from it. I was left with horrible muscle stiffness and pain that wouldn't go away. I self treated with Prednisone, Naproxen, Vicodin, anything I could get my hands on. I mentioned it to my hematologist who ran some tests, such as the ANA, SED rate, etc. The ANA and SED rate came back elevated and he referred me to a rheumatologist. I've never thought that Rituxan directly caused any of my problems, but I do think that my serum sickness reaction triggered it.
The rheumatologist did more specific tests and everything else came back fine except the Compliment Levels. However, based on those labs, he would not give me a diagnosis. I was happy with that...I didn't want a diagnosis and was satisfied with simply managing the symptoms. I continued to see him every four months for a year and a half but, in that time, did develop flu-like symptoms every few weeks that lasted about four days at a time. I also had fatigue and brain fog. The rheumatologist prescribed Plaquenil because he wanted me to try to get off of the steroids. He still insisted that he wouldn't diagnose Lupus based on my labs. Still happy with that since I didn't want Lupus anyway!
Four months ago I had the routine blood work and this time my ds-DNA was positive. That was the clincher for the diagnosis. I had also asked him to humor me and do an APS panel because I just wanted to be able to rule that out since it is common with ITP. Two days after I got the Lupus diagnosis, he called me with the news that I also had anticardiolipin antibodies.
The world dropped out from under me. I truly fear APS more than Lupus and right now, take only baby aspirin for that since I've had no clotting incidents. My platelets have been hanging in the 120 to 150 range for two years (with a few drops into the 60's) and I'm content with that. I've never had the rashes or joint problems associated with Lupus, mainly just muscle pain and overwhelming sleepiness. I also have many days where I'm dizzy and spinning, but just keep going anyway. After three months of anxiety and panic, I've calmed down and accepted what is. My doctor feels that I will most likely have a mild case of Lupus, but I know there is no way to predict this disorder. I don't know what the future holds, but I'm optimistic that the early diagnosis will be a benefit. I'm also hopeful that with proper treatment and by staying informed, I can prevent a serious problem before it arises.
Hi, my name is Renee.
I have recently been diagnosed with SLE. It has been a long wait for a diagnosis. Last July, was when I began to seek medical attention to find out what was wrong with me, I started out feeling really tired, my heart beat would race, and I would have hot flashes almost feeling like someone would put a hot towel around my neck.
They tested me for diabetes and thyroid. My thyroid was a little abnormal, so they said I could have hyperthyroid. Then when I went for a second time, my blood was fine. So they started asking me questions like, ďDo you take time out for yourself? Are you depressed a lot?Ē Those questions really made me mad because they were trying to focus on depression being the major problem. Yes, I was or am depressed a lot, but mainly because I didn't know what was going on. I was short of breath and my heartbeat was very rapid. So they did an EKG. Everything was fine. The doctor basically wanted to give me something for my nerves thinking it was stress and depression.
So I had to choose another doctor, who did more blood work and found that my thyroid was fine, my blood sugar was low, and my ANA was positive for RA. He sent me to a rheumatologist who took more blood and said I had a butterfly rash on my face. I just thought the rash was acne. My blood work came back and I have some anemia. I have noticed that my rash only gets bad when I go out in the sun or I have what my doctor calls a flare.My symptoms are very light as far as the lupus is concerned, but I have major pain in my hands, neck, hips ankles and feet.I feel like I'm going crazy sometimes. My head feels fuzzy like I can not think straight and sometimes I can not talk plainly and get out my sentences clearly.I have read a lot of stories about much worse cases and wonder if anyone is in the same phase as I am and could tell me what to expect next.Thanks,Renee, Georgia
Hello, my name is Isabel and I've had lupus for almost 10 yrs.
I am the oldest of a family of 8 children, three of whom have SLE and a sister passed last year from breast cancer and kidney failure due to Lupus. All but one are female.
We have participated in a genetic study that is being performed at the UCLA Medical Center in Southern California to find out if genetics is involved with the Lupus patients. I hope they hurry up and let us know.. (haha).
Doctors believe that I may have had Lupus since I was very young. Painful rheumatoid arthritis and osteoarthritis has plagued my body in numerous ways. I also have other health complications that have developed over the years. But that's for another topic, another day.
Your new Lupie friend
Hello, my name is Ginger. I am 43 and taught school for 14 years and was forced to be disabled by lupus. I found out after extensive researching that I have Lupus (SLE), Raynaud's, Rheumatoid Arthritis, Lupus Anticoagulant, and have had three organs involved.
It is very hard to try to live as close to normal of a life as you can when my body is not normal. I thank God each day that I am living and I try to do everything I can when I have my better days.
I have been on long-term Prednisone use, which has many side effects, plus it induced diabetes. I am now taking Imuran daily and I do not know if this is helping or not due to the fact that my sed rate is still going up.
I have learned to walk with the Lord because I could not walk alone.
I have seven (7) blown discs in my back from osteoarthritis. Trying to not be depressed and stressed is a real task. I have had to learn to take life at a much slower pace. I have to take 14 different medications daily and life is very difficult, but with God's help I am making it.
Keep the faith and let's all pray they find a cure. God will hold you up when you fall down.
Hi. My name is Nellie, A Lupie. I have said it a million times that I have lupus, but for some reason, saying it now, to who knows how many other people who may read this and understand, it seemed different, emotional.
Maybe this is because Iím so tired of feeling the way I do. Is it harder to deal with the disease and its physical attacks or is it harder to deal with the feelings of inadequacy? Not being able to do things without help, not being the lively fun mom I once use to be.
I use to play in the snow with my boys and fish for hours on end and hike. I could be of help to others and not need help from others. Sometimes I feel like Iím in this world all alone. But, there are those who suffer the same wickedness that I do and they understand as they too feel the pain, both physical and emotional. I know I can count on them to listen to the endless ups and downs, more the latter. I know without being told that they truly understand and I don't have to feel resentment when they say it because they do understand.
We are kindred spirits, and to think that our paths may have never crossed if we didn't have this illness would almost seem a waste...because the friends I have made who have lupus are treasures.
Good days are golden, but not pain free or over abundant with energy. They are treasured and often not used with care, but I usually go full head into them. And for just a while Iím a super domestic engineer! Who would think doing dishes and a few loads of laundry would be so gratifying and make you feel so important and successful?
Who knows why God allowed for this to happen, or if he did, but Iím not gonna give up! I will hold my boys no matter how big they are and love them like there ainít no tomorrow. I will continue to make good memories so they wonít remember the not-so-good memories. Photography is my passion; it is very evident in my home. But the best photograph is a memory taken with the heart.
So my eyes want to go haywire; I will just get glasses and buy large print books (which happen to be very hard to find). When my legs hurt I will let them have a rest and mate socks or sort papers from bed. When my head hurts and feels like it will explode, then I will just go get my injection and if I start to feel self-conscious about it then I will remind myself that it is my pain and they canít see it. All that matters is what I know and what I feel.
If people want to judge me for being ďlardyĒ then I suppose that is too bad, because they too can get this way; lupus isn't picky when it chooses its victims. And they too may have to be on high doses of wicked wonder drugs that take over your body and morph you into an unrecognizable vision when you look into the mirror.
Oh, I could go on and on, but you know I feel better because Iím not alone. That can be scary to be in a house full of people and feel lonely. It is different than just wanting a friend and feeling alone; it is like being in a strange town where no one knows you. They know you have this "thing" but they don't know you and your pain. I wonder if they think Iím full of it or for real. Or they are so tired of it or they are use to it so they just ignore it. I have my Lupie friends and the Lupies in lupus chat so I will be fine.
So anyway that is me in a rather large nutshell. 38 years old, ten years into this at least. Mother of three wonderful boys, ages 20, 17, and 131/2. Daughter of a fun, loving, supportive, wonderful mom who, with arthritis and diabetes herself, will drop it all to come be with me when Iím sick, will listen to me and all my woes; my best friend. And my DH who has spent many hours and days with me at the hospital and makes sure I get to the beautiful mountains once in a while and helps me to sometimes forget that I have this thing.
I wish to all my Lupie kin out there that life and all those in your life will treat you with love, kindness, a soft touch and a great understanding. I wish for you many golden days and the strength and knowledge to use them wisely. And that there will be many photographs taken with your heart. Don't forget that you aren't alone and the hard times make us strong.
Yep, we should be a bunch of tuffys ready to take on the next thing with our gloves on and at a stance.
Love and blessings to you all, Nellie
ďGod grant us the serenity to accept the things we cannot change, courage to change the things we can, and the wisdom to know the difference...AmenĒ
I turned 49 years old in 2004 and I still have not had the tests to determine if I really have Lupus. Iíve battled symptoms for most of my life and it wasnít until the last few years that the progression of the symptoms has so affected my life, that Iím being pressured to take the necessary tests. Iíve always managed to compensate for the fatigue, migraines, foggy brain and the after-effects of a flare.
Over the years, the flares have been miserable. I developed a migraine so severe at age 32 that I ended up in the emergency room. I had terrible headaches for ten years. When I had my daughter, my blood pressure was such a problem I had an emergency c-section. At age 39, I started gaining weight very quickly. In a year I must have gained twenty pounds and, as hard as I tried, I couldnít lose. I did everything right and nothing would stop it. My flares seem to occur after two things: high stress and/or exposure to cold weather.
In 1999 I developed a bad rash across my face that lasted for months and burned in the sun. I also had pneumonia that year.
In December 2001, I traveled to my home in Florida and got mysteriously ill. For two weeks I couldnít lift my head off the pillow. We cautiously flew home and it took me another few weeks to feel healthy again.
In 2002, I was having numerous problems: terrible fatigue, short-term memory loss, eyestrain and extremely heavy bleeding problems. The bleeding left me anemic. Kaiser suggested I had fibromyalgia. I had poor muscle control and an unsteady gait.
In the fall of 2003, I hurt my shoulder and was in such pain that I was in physical therapy for months, but had to stop because of cost. I have severely limited use of my left arm. It was then that I started researching what the heck could be going on.
Since that time, Iíve had continuing trouble. Returning home from work one evening, I had severe muscle aches and pains. My ankles, jaw, wrist and the muscles in my legs and arms were so painful that I couldnít dress or undress myself. The swelling in my limbs was so bad I couldnít walk; I stomped instead (very gently).
So thatís it. I need help because this is overwhelming. I have no insurance because I cannot work full-time. I need to see a doctor who can help and get me back on a better path of care. I want my life back.
~ Cathy, California
My name is Teresa and I am 51. I was finally diagnosed with lupus 3 years ago.
In 2001, I got sick and was having a hard time breathing. I couldn't even get up my stairs. I went to my GP and a chest x-ray revealed an enlarged heart. I then was referred to an internist and had an echo at the hospital and was admitted. They drained off 1500cc of fluid, gave me prednisone and sent me home.
I went to Rome the next month, came home short of breath and was found to have fluid built up again. I spent 9 days in the hospital and still had no diagnosis. Doctors did perform a pericardium window to keep the fluid from building up. I was given prednisone at very high strengths. Still no one could say it was lupus. I told doctors of the pain I would have sometimes as a teenager in my chest, but it would just go away. I never have had a positive ANA. I was sent to the rheumatology department at USC. They finally said it is lupus!
I am now taking Enbrel; all other medications have been tried. My sed rate is 50 most of the time. I am now down to just 10mg of prednisone and my doctors want to get off of that drug. I also have fibromyalgia. I now take two blood pressure medications along with Fosamax, Cytoxan and Amitriptyline (for the fibro). I have also had fluid around the sack of my lungs. My legs hurt most of the time, but my joints are fine. I do run a low-grade fever; that's how I know I am having a flare-up.
I have never been completely in a remission yet, but the Enbrel is helping me and it is getting my sed rate down to 30. My insurance has been great to approve this medication. I hope my story can help someone else.
Iím 50 years old and was diagnosed with SLE and fibromyalgia on December 3, 2004. When I first went to my sisterís rheumatologist, I was sure that he was going to tell me that I had Rheumatoid Arthritis (RA). Iíve always had pain in my life. I also have a family history of arthritis: my father had RA and my sister has Osteoarthritis. My father passed away in 1982 from complications from his RA.
When I was young, it was ďgrowing painsĒ. As I grew older and had children, I learned to ignore the pain; I was too busy. Iíve also always had hives. When I was young I suffered from recurrent kidney and ear infections. I guess in retrospect my body was telling me that I wasnít normal.
I had been taking my sister to this rheumatologist for about 4 years and had come to like and trust him. So, in August 2004 when Vioxx was pulled from the shelves and I had to quit taking it (while on vacation I might add), I must have had the ďmotherĒ of all flares! I was so dizzy I could not bend over. I hurt from the top of my head to the bottom of my feet.
So I made an appointment with my sisterís rheumatologist. On October 1, 2004, he examined me, took x-rays and blood and informed me that I had osteoarthritis and fibromyalgia. I was so surprised Ė I was expecting RA! He prescribed Plaquenil, Cymbalta, and Celebrex. I returned November 5 and the doctor asked how I was. I felt better, but still not well. I was just so tired and still in such pain. He told me that one of my lab tests had come back positive for Lupus. I couldnít believe it! He said not to worry; he would perform a more detailed lab test, the ANA.
The results of the ANA confirmed that I had SLE. I was still experiencing a lot of pain, so the doctor gave me Darvocet and 10 mgs. of prednisone for 1 week, then reduced to 5mgs.
My mother was hospitalized the following week for congestive heart failure for 10 days. This was a very stressful time as I was working 40 plus hours a week, taking care of my mother and sister and my home. Lupus was kind of put in the back of my mind.
Then, Christmas Eve arrived. With the cooking all day, cleaning, and company - guess what? I crashed Christmas Eve night, falling flat in the bathtub after standing up and getting very dizzy and weak. Thatís when the reality of LUPUS hit me.
I donít have to do what Iíve always forced myself to do. I canít anymore, physically or emotionally. WOW! Now thatís real fear! I donít know where Iím going from here. I donít know what to expect. I try to be my normal self.
My poor husband doesnít know what to do. On Christmas Eve he came home to me on the couch in full meltdown and the bathroom floor full of wet towels and rugs. He didnít know what to do, so he went to the kitchen with a book and left me alone to recover and clean the bathroom.
Iím scared and so new to being a Lupie. So many of you have coped for so long, I admire you, and am finding strength in your perseverance. There is hope for me, I guess.
Thanks for listening, Cathy
Hello, my name is Brenda. I am 23 and was diagnosed with Lupus at the age of 14.
I had watched my Mother live through it and was terribly scared of being sick for the rest of my life. It all started with headaches, two years in and out of the doctorís office before they finally did a blood test, which came out irregular. From that point on, it was one test after another until I was diagnosed. It wasn't severe enough to worry about; I had a short time with depression and the occasional kidney infection. It all seemed to be going OK, until I turned 19.
I had kidney stones and then one infection after the other. Soon, I felt so horrible I went to the hospital where they told me my blood platelet level was something to worry about. I was immediately put on prednisone, which made me horribly ill. After a month of extreme steroid therapy, it seemed to have been working. Yet, every couple of months it drops again and I go back on the therapy.
I have been able to meet 5 members of my family who are very brave women and all have lupus. I still have a hard time; every year that passes I get a little worse. I try to remain vigilant and positive, yet find it hard sometimes when I am fighting so hard just to get up in the morning.
I applaud everyone for living with this disease and making it through. One day they will find a way to help ease our pain and worn out minds. My love and prayers to all of you.
~ Brenda, Nevada
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