You know the saying "smile and the whole world smiles with you"? Well, in the case of Lupus I say smile because if you don't, you won't and it always feels better to be happy. I smile as much as I can, at who I can. Don't get me wrong, I have bad days just like everyone else, but living and dealing with this disease can make or break you. I choose to live as much as I can without making myself more ill.
Got to go, making an apple pie for dessert.
Tuesday, April 28, 2009
Monday, April 27, 2009
Don't let Lupus rule your Life
I know that it sounds like a pain in the ass, but the way that I learned to live with Lupus was to document it. I spent about a month documenting and analyzing everything that I did. With that said, it worked. I don't have near as many bad days when I avoid my triggers. Everyone has different triggers and I am so glad that I took that month to track this disease. I don't feel as guilty saying no when asked to do something because I know that it will make me sick and I am much happier, Not being sick.
A message from Noel
Hi KimFirst of thank you so, so much for all of your hard work on posting all of the lupus stories on your blog. They are fascinating, heart-wrenching and so helpful.One of the comments made by Pauline really stood out for me and I wanted to leave her a comment but sadly am technically challenged and do not know how so hope you do not mind if I pass it on to to you instead!??? Pauline said:"What price will you pay for pushing? If you push Lupus too hard sometimes it pushes back with worse symptoms that cause you to digress for longer periods of time. Pushing too hard can cause to disease to accelerate."These are the wisest words I have heard. I was diagnosed with lupus in 1999 and have lived with it since 1972. When I first found out I "fought" it tooth and nail! I was determined "it" was not going to get the best of me! However, little did I know that the harder I pushed and ignored the fatigue, the worse harm I was doing to my body and the lupus was still winning, not I. If ever there was an excellent message for "new lupies" out there, it is this one. Do not ignore the signs your body is giving you when you have lupus. You must learn to respect "its" boundaries and get the rest "it" demands! Your longevity will be your reward!Thank you for your wise words!!!!
Noel
Noel
Sunday, April 26, 2009
Everyday, even the good ones, are a struggle.
No matter what the day brings, I have to fight for it. I have to fight to move in the morning when I hear my son wake up. If I didn't get out of bed then, I probably never would. I fight to go outside (covering myself, which is an art when it is 40 degrees outside and you are sweating from every orifice) and still dressing with style. I fight to have fun with my family (they usually end up having to go without me because if I get sick, well, what will they do?). Having fun with them, means pain later (joints on fire, bones cracking), but you know one thing that I always remember....HAVING FUN WITH THEM WHEN I CAN, IS WORTH SOME PAIN LATER.
Why I Love the Clouds
The Clouds? you say. Come on. Nobody likes clouds. Who doesn't love a beautiful sunny day? Well, me. I see the sun and I see poison. I see and feel aches and pains, rashes starting, headaches forming and the bed calling. But today, a day with no blue in the sky, well, I get to come out of jail and play in the open air. We are headed to the driving range and then roller blading (weather permiting)
I love the days when I can wake up and play with my son and to have the clouds on a Sunday (the only day that the 3 of us are together) well I am extatic. And out of here as the case may be. Lunch is done and it is time for fun.
I love the days when I can wake up and play with my son and to have the clouds on a Sunday (the only day that the 3 of us are together) well I am extatic. And out of here as the case may be. Lunch is done and it is time for fun.
Pauline's Story
I have Lupus. It's funny how you know that there is something wrong with you, even though every test seems to say otherwise. I had the usual problems that many women face. I have problems with menstruation, migraines, depression, tiredness, aches and pains. Well I least I thought it was normal. I just learned to live with it. Thank God for the female doctor I had the opportunity to meet; she listened to me and sent me for tests. After examining the results, she then sent me to a rheumatologist where I was diagnosed borderline Lupus. What is borderline Lupus you say? Good question, I wasn't too sure what it was either. Turns out my problem was that I minimized my symptoms so much that she didn't give me a definite diagnosis. I have since learned my lesson. So I continued, living with the symptoms and not bothering to see her for another year. After that I just didn't bother. I was depressed that I felt this way but nothing was being done. That is when I began to research what Lupus was. I went on many forums and read the stories of others and their journey to a diagnosis. I realized I needed to change my approach. Finally, something good happened. I was getting some asthma symptoms (not good), so my GP sent me to get tested. I was sitting in the office after my tests to wait for the Immunologist when I started to realize that this person might know something about Lupus. Lupus is an autoimmune disease and she was an immunologist! She must know something about the immune system. So I decided to discuss it with her. She said yes, she had done lots of work at McMaster University Hospital in the Lupus Clinic. Well I tell you, that was music to my ears. I started to get excited and have hope. We discussed my situation further and she was glad to take me on. She sent me for lots of blood tests and I brought all my previous blood tests from years before. She diagnosed me right then and there with Sub acute Cutaneous Lupus Erythematosus. Was I relieved~ I wasn't crazy after all and my depression was not my fault. There was a reason that I felt like this and it wasn't because I wasn't trying hard enough. Well she started me up on Plaquenil and anti-inflammatory drugs, which helped me cope. I was so happy to be finally treated for this disease. Hallelujah! I know is may seem funny to be happy about such a terrible diagnosis, but it is true. Finally knowing what I was dealing with made me happy. Well of course that happiness was short lived. The illness itself is very difficult to cope with and it's not just the symptoms of the disease. There is the emotional and mental toll that it takes as well. There are so many things you just don't think about when dealing with a chronic illness. It's really very hard to explain to someone who has not experienced it, but I will Endeavour to try. Since my diagnosis, I have had many challenges with this disease. I have tried to hold down a few jobs and lupus always seems to interfere. The first job I tried after diagnosis was working in a retail store. Eventually the strong fluorescent lighting triggered a flare in me. I was getting migraine headaches, fatigue and painful joints. I had to quit this job as it was affecting my quality of life too much. This was very discouraging. What could I do to help out my family financially? It was getting harder and harder to find a job I could do. Lupus is a funny disease as it affects so many aspects of your life. It usually does not have just one symptom but many. This causes confusion in what type of treatment could be needed. I suffer from myriad of symptoms; such as, fatigue, migraines, painful joints, TMJ, depression, IBS, GERD, chronic constipation, memory problems, and anemia. Living with Lupus is most challenging as it appears to all that I am well. I still function, and look well on the outside. That is because I have learned to carry on with this. What are my other options? Those with lupus tend to feel like we are a burden to those around us, because many days our fatigue is so great we can barely get out of bed. Most times we force ourselves out of bed to function as normal people. When do you push, and how hard? That is a question Lupies ask themselves every day, sometimes every minute. Should I push myself today? Should I do this now? I'm tired now, but well maybe just a little more. I mean how much time should one person rest? How long is long enough? How hard and how far should I push myself each day? These are all valid questions that I find myself asking every day. I think well I don't feel good right now, should I ignore it and just continue to do my chores. After all there are lots of people who don't feel good and still get up and go to work. Why should I be any different? Well partly it has to do with the how people view illness. There is a prevalent attitude that says, "pick up your bootstraps and carry on". Who takes the time to be sick anymore? You take a pill and you keep on going..... The problem with that mentality when it comes to Lupus is that even though you can keep going, should you? What price will you pay for pushing? If you push Lupus too hard sometimes it pushes back with worse symptoms that cause you to digress for longer periods of time. Pushing too hard can cause to disease to accelerate. This is a frustration with the disease. Lupus can become serious at any time. It can affect the heart, lungs, kidney, liver, nervous system, and blood. The other frustration of Lupus I face is that of feeling like a hypochondriac. So many symptoms together cause one to feel discouraged and overwhelmed. I go see my doctor and he endeavors to deal with one aspect of the disease one at a time. This is a long ordeal which can be very frustrating for patient and doctor alike. This causes a lot of emotional difficulties that tend to plague most with lupus. The stress and emotional issues again play havoc with the disease. It’s like one vicious circle that goes round and round. It takes emotional and mental strength to cope and many find it just too difficult. I have taken the approach of proactive health. I work hard to find ways to improve my health through exercise, diet and attitude. Every day is a challenge and lots of work. I hope one day there will be a cure for this disease, or at least a way to keep it dormant. Thank you for listening to me. I hope this helps you to understand what it is like to live with lupus.
Kelly's Story
My name is Kelly Morrisseau and I was diagnosed with Lupus on October 27, 2004, at the age of 27.
I was a young healthy aboriginal female who had everything going for her.
I was first hospitalized in June 2005 for 3 weeks with severe water retention, I was originally 130lbs. and with the water I bloated up to 180lbs. carrying 50lbs of water I could no longer walk and was admitted and put on a heavy dose of IV Lasix and a strict and minimal fluid and sodium intake diet. At this time I also began getting leisons on my body that would scab and eventually scar, sometimes the water retention was so great that it would break the leison and start seeping water, I cry as I write this part because out of all the things I went through watching me turn into a leaking water balloon was probably the hardest, it was so embarrassing having a soaking bed, soaking socks & shoes, even at home I would have to have a soaker or a towel under my ankles to absorb the water, I hated it.
After 3 weeks of battliing the water I was released only to return 2 weeks later. One morning I found a small red spot on my ankle, I knew I had a Dr.s appt at 300 p.m that day and waiting for that would be quicker than waiting in the ER the spot quickly spread up and around my leg up to the bottom of my knee, by the time I checked in for my appt. I could not walk and the entire area below my knee was red and painful. I showed my physician immediately and was admitted to hospital again, with cellulitis and a hematoma was found growing in my calf.
That evening in hospital I received surgery on my bed in my hospital room (so weird) and a litre and a half of puss was removed from my calf by a plastic surgeon. I was in a wheelchair for the 3 weeks that I was in hospital and when released I had to have home care to attend to the dressings and attend rehabiliation to help me get my balance back and to improve my muscles.
I have also undergone 15 months of cyclophosamide which was so gruelling and hard on my body, caused me to lose my hair and well I guess I suffered through the other effects that come with cheemotherapy treatments, pretty much what it is.
15 treatments is pretty much the maximum amount I can receive anymore than that and I risk the chance of developing another disease, we can only kill so many of our cells.
But today I still battle this disease with a large bag of pills, a strict diet, constant Drs appointments with various Dr.s and the fear that any day now it can all come rushing back to me and maybe next time with a whole new set of diseases. I fear when I gain a pound, when I get dizzy, when I get too tired for a simple task, a see a scab, my eyes get puffy, I lose a hair. The fear and the unknown are almost unbearable.
I could go on with stories on the small stuff but its emotionally hard enough to write about the big ones.
Tis the season and everyday I thank god for my Renal specialist and his staff and every year he has an extra present under the tree and his nurses have an extra large bag of sweets for how sweet and sensitive they are to me.
God Bless You and your efforts
Kelly Morrisseau
Survivor
I was a young healthy aboriginal female who had everything going for her.
I was first hospitalized in June 2005 for 3 weeks with severe water retention, I was originally 130lbs. and with the water I bloated up to 180lbs. carrying 50lbs of water I could no longer walk and was admitted and put on a heavy dose of IV Lasix and a strict and minimal fluid and sodium intake diet. At this time I also began getting leisons on my body that would scab and eventually scar, sometimes the water retention was so great that it would break the leison and start seeping water, I cry as I write this part because out of all the things I went through watching me turn into a leaking water balloon was probably the hardest, it was so embarrassing having a soaking bed, soaking socks & shoes, even at home I would have to have a soaker or a towel under my ankles to absorb the water, I hated it.
After 3 weeks of battliing the water I was released only to return 2 weeks later. One morning I found a small red spot on my ankle, I knew I had a Dr.s appt at 300 p.m that day and waiting for that would be quicker than waiting in the ER the spot quickly spread up and around my leg up to the bottom of my knee, by the time I checked in for my appt. I could not walk and the entire area below my knee was red and painful. I showed my physician immediately and was admitted to hospital again, with cellulitis and a hematoma was found growing in my calf.
That evening in hospital I received surgery on my bed in my hospital room (so weird) and a litre and a half of puss was removed from my calf by a plastic surgeon. I was in a wheelchair for the 3 weeks that I was in hospital and when released I had to have home care to attend to the dressings and attend rehabiliation to help me get my balance back and to improve my muscles.
I have also undergone 15 months of cyclophosamide which was so gruelling and hard on my body, caused me to lose my hair and well I guess I suffered through the other effects that come with cheemotherapy treatments, pretty much what it is.
15 treatments is pretty much the maximum amount I can receive anymore than that and I risk the chance of developing another disease, we can only kill so many of our cells.
But today I still battle this disease with a large bag of pills, a strict diet, constant Drs appointments with various Dr.s and the fear that any day now it can all come rushing back to me and maybe next time with a whole new set of diseases. I fear when I gain a pound, when I get dizzy, when I get too tired for a simple task, a see a scab, my eyes get puffy, I lose a hair. The fear and the unknown are almost unbearable.
I could go on with stories on the small stuff but its emotionally hard enough to write about the big ones.
Tis the season and everyday I thank god for my Renal specialist and his staff and every year he has an extra present under the tree and his nurses have an extra large bag of sweets for how sweet and sensitive they are to me.
God Bless You and your efforts
Kelly Morrisseau
Survivor
Lori's Story
I’m not sure what I can say that can help…except that my life has changed drastically since I have been diagnosed with Lupus, and one of the biggest obstacles has been employment. I’ll start from the beginning…because I have only had a diagnosis 7 years ago (Sept, 2001), although symptoms were present and building up for at least 10 to 15 years earlier. Diagnosis is another big problem with Lupus sufferers that I have found with talking to other people with Lupus.
I realize that a lot of Lupus sufferers are diagnosed earlier in their life…like teenagers or young adults. That was not my case. By the time I was diagnosed…I was 41 years old…yet, there were symptoms for years and was told by various doctors that I had “Lupus-like symptoms”. But I was never referred to a specialist…which could have put me on medications that could have prevented the inevitable destruction of my life.
I say that, because, even though there were some symptoms…I was in very good shape, both athletically and in general health. Yes, I was 41 when I was diagnosed, but I was in top shape for my age…actually…I was pretty buff and strong, and proud of it! I was a single mother, and I worked at a stressful job, and I didn’t own a car, so I walked half a mile to get groceries, and did “everything” myself. So, I built up a pretty healthy body through hard work, and was the envy of friends and co-workers, and known to be a real go-getter! And I had energy that could drive people nuts! I was…go-go-go! This is the person I am used to being…the one that people joke about bouncing off walls with so much energy!
This is why when one moment…in the middle of the night…I woke up to such excruciating pain that I could not move…and my life changed! It was sudden, and scary, and although my oldest sister had been telling me for years that I had Lupus (and I told her she was crazy…I’m totally healthy…but she saw it in me) it still took me by surprise! And then there was the humiliating episode at the hospital that night where the doctor on charge in the ER thought I was faking it and treated me like some street person wanting drugs! Yeeesh! It was humiliating! I showed up to the hospital terrified about what was going on with me…and they treated me like dirt! And then…I have to phone work and say something like I can’t “move”. Lori…the go-getter can’t move?
Since that day…my life has changed so drastically. I feel like I don’t know myself…or to put it better…the Lori I once knew has just disappeared! I don’t have that energy. I have pain every day. I’m sick all the time…whether it results from the Lupus or the side-effects of the medication…I don’t remember ever having a normal day for the longest time!
A few months before this happened…I lost my mother…and I grieved her loss. I have been grieving her loss since, along with the loss of “ME!” The loss of me does not only affect myself…it affects my children (which I could not take care of them the way I used to). It affects my social life when I don’t have the energy to go anywhere. I can’t go outside in the summer because of the sun’s effects on my Lupus. Anytime the weather changes…my hands feel crippled!
I am lucky that I have a spouse that is very understanding. He knew me before I had Lupus, and admired me for my energy back then, but is now doing the dishes and vacuuming that I can’t do any more because of the arthritis. He is a charm!
But…the worst part of having Lupus is the outside world. Employment is the hardest part of being disabled with Lupus. Of course, companies are open to people who are wheelchair bound, or deaf, or some kind of minority that you can obviously see. But, try to explain to an employer, or a potential employer about your Lupus condition, and that you get sick once in a while, and guess what…NO JOB!!! Even though Lupus is under the umbrella of disabilities as a chronic condition…As noted on the Government of Canada website…
Employment Equity
Designated Groups
Persons with Disabilities
As defined in the Employment Equity Act, "persons with disabilities" means persons who have a long-term or recurring physical, mental, sensory, psychiatric or learning implement and who;a) Consider themselves to be disadvantaged in employment by reason of that impairment, or;
b) Believe that an employer or potential employer is likely to consider them to be disadvantaged in employment by reason of that impairment; and includes persons whose functional limitations owing to their impairment have been accommodated in their current job or workplace.
I, myself, work for the Federal government. I will not state in what department. I had been working with them for 2 years when I had had my big Lupus flare episode (as mentioned earlier) and was finally diagnosed. But since I have been diagnosed, I have found myself having to fight for my job because of my Lupus. I have worked for them as a seasonal employee for the last 10 years. They have always been happy with my work and my professionalism, and they generally like me as a person…but, because I need to take some sick days off because of my Lupus…they have to have “The Talk” with me at the end of the term each year. Even though I try to explain my situation with them…it is their policy that anyone who takes sick days goes to the bottom of the re-hire list. So…even though I do better work than other employees…I am treated like scum because I am sick some days. That is the companies…”The Government of Canada’s” policy! Yeah...Canada ! My supervisors who know me personally…have always been very understanding and kind, and have actually apologized to have to give “The Talk” because they know I am a good employee…but policy makes them do it…and at the end of every term…we all end up crying…because they hate to treat me that way. And they know I am a good employee, and they know that I can’t help that I am sick. God bless the real people! But…I never know if they will phone me back to work…so far they have…they know I am a good employee…but I hold my breath! I am holding my breath right now for a call-back!
The sad fact is…that I work for the Federal Government…and they can’t even respect this as a disability! So the Canadian Government discriminates against employees with chronic illnesses with their own employees…how can they even empathize with the common citizens with chronic illnesses! And they should be the role model for the rest of the country for equal treatment of its employees. Shouldn’t they? Many of my co-workers are in agreement on this and are always sickeningly shocked about how I’ve been treated these past few years since I’ve had Lupus. Those co-workers have been my strong-hold! I couldn't have made it through work without those people who understand that I am in pain, and am trying to make it through my day! God Bless them!
But a big strike against the Government who is supposed to be the role model of Equal Opportunity!
Not only that…even though I have had this running seasonal job with the Government…I have been trying to find a full-time job. I have tried and tried…but when you have a history of sick days…or are asked during your interview about absences and have to send references…well, you never get a call back. Even when you explain your condition…NO JOB!!! How is this equal opportunity!!! It sucks big time!!!
I cannot find a full-time job anywhere because of my condition! I am completely frustrated trying to find work with Lupus. Nobody wants someone like me.
Equal Opportunity...It does not exist for someone like me! I am slowly becoming more disabled because of the Lupus and can understand the need for disability. But, I am sick of the inability to be treated like a human. If nobody will give me a job…even our own Government…how am I supposed to live? And to top it off...there is no options for people in our situation to get disability. We are in the fringes.
I can only speak for myself. I can work...but I can't tell you what day I can work. I can wake up one day and can't move...or one day I can. Today, I can put curlers in my hair...tomorrow...I can't even lift my hand to even brush my hair or my teeth. Or...sometimes...I get up to go to work, and I feel okay, and 2 hours into work...all my joints feel like a truck ran over me. How do you explain that to your boss? One hour is not the same as the next! How does one keep a job feeling this way? Only a Lupus sufferer knows this! This has caused great suffering for me and quite many days of depressions because of waking up and not being able to work. It is humiliating...because many people do not understand or even know about Lupus...so start rumours around work that I am faking some strange disease. There are whispers at work and signals that I am lower...and it spreads. And all I did was take a few sick days...but they turn it into something that I don't even know what...but, I know that they don't understand about Lupus and they think I am faking something. Which I cannot defend...except. if I could change my life to be what I was...I would in a flash. But, here I am...a Lupus patient! Helpless in the continuing failure of my bodily functions.!
How there is no financial safegaurd for this is unfathimable! This is not an illness that can be controlled! It is very unmanagable...and I have tried very hard to manage it...much to my frustration in doing so! It only gets worse year by year! And, as a person who has been very healthey and energetic and a go-getter that has had the misfortune of getting this condition....I completely agree that there should be some disability insurance given to those who suffer from this condition as well as others with similar conditions. Lupus, as well as other Auto-Immune conditions are an under educated, but growing, conditions that need to have more media attention!
There should defintely be some disability insurance for chronic sufferes of these conditions that are having a hard time living day to day and can't find employment due to their condition. Just because they aren't in a wheelchair does not make them no less disabled. It is a real illness...trust me. As a person who truly aches to be a whole person, but can't...We Need Help! I truly wish we didn't...But...We really do!
LORI NOAD
I realize that a lot of Lupus sufferers are diagnosed earlier in their life…like teenagers or young adults. That was not my case. By the time I was diagnosed…I was 41 years old…yet, there were symptoms for years and was told by various doctors that I had “Lupus-like symptoms”. But I was never referred to a specialist…which could have put me on medications that could have prevented the inevitable destruction of my life.
I say that, because, even though there were some symptoms…I was in very good shape, both athletically and in general health. Yes, I was 41 when I was diagnosed, but I was in top shape for my age…actually…I was pretty buff and strong, and proud of it! I was a single mother, and I worked at a stressful job, and I didn’t own a car, so I walked half a mile to get groceries, and did “everything” myself. So, I built up a pretty healthy body through hard work, and was the envy of friends and co-workers, and known to be a real go-getter! And I had energy that could drive people nuts! I was…go-go-go! This is the person I am used to being…the one that people joke about bouncing off walls with so much energy!
This is why when one moment…in the middle of the night…I woke up to such excruciating pain that I could not move…and my life changed! It was sudden, and scary, and although my oldest sister had been telling me for years that I had Lupus (and I told her she was crazy…I’m totally healthy…but she saw it in me) it still took me by surprise! And then there was the humiliating episode at the hospital that night where the doctor on charge in the ER thought I was faking it and treated me like some street person wanting drugs! Yeeesh! It was humiliating! I showed up to the hospital terrified about what was going on with me…and they treated me like dirt! And then…I have to phone work and say something like I can’t “move”. Lori…the go-getter can’t move?
Since that day…my life has changed so drastically. I feel like I don’t know myself…or to put it better…the Lori I once knew has just disappeared! I don’t have that energy. I have pain every day. I’m sick all the time…whether it results from the Lupus or the side-effects of the medication…I don’t remember ever having a normal day for the longest time!
A few months before this happened…I lost my mother…and I grieved her loss. I have been grieving her loss since, along with the loss of “ME!” The loss of me does not only affect myself…it affects my children (which I could not take care of them the way I used to). It affects my social life when I don’t have the energy to go anywhere. I can’t go outside in the summer because of the sun’s effects on my Lupus. Anytime the weather changes…my hands feel crippled!
I am lucky that I have a spouse that is very understanding. He knew me before I had Lupus, and admired me for my energy back then, but is now doing the dishes and vacuuming that I can’t do any more because of the arthritis. He is a charm!
But…the worst part of having Lupus is the outside world. Employment is the hardest part of being disabled with Lupus. Of course, companies are open to people who are wheelchair bound, or deaf, or some kind of minority that you can obviously see. But, try to explain to an employer, or a potential employer about your Lupus condition, and that you get sick once in a while, and guess what…NO JOB!!! Even though Lupus is under the umbrella of disabilities as a chronic condition…As noted on the Government of Canada website…
Employment Equity
Designated Groups
Persons with Disabilities
As defined in the Employment Equity Act, "persons with disabilities" means persons who have a long-term or recurring physical, mental, sensory, psychiatric or learning implement and who;a) Consider themselves to be disadvantaged in employment by reason of that impairment, or;
b) Believe that an employer or potential employer is likely to consider them to be disadvantaged in employment by reason of that impairment; and includes persons whose functional limitations owing to their impairment have been accommodated in their current job or workplace.
I, myself, work for the Federal government. I will not state in what department. I had been working with them for 2 years when I had had my big Lupus flare episode (as mentioned earlier) and was finally diagnosed. But since I have been diagnosed, I have found myself having to fight for my job because of my Lupus. I have worked for them as a seasonal employee for the last 10 years. They have always been happy with my work and my professionalism, and they generally like me as a person…but, because I need to take some sick days off because of my Lupus…they have to have “The Talk” with me at the end of the term each year. Even though I try to explain my situation with them…it is their policy that anyone who takes sick days goes to the bottom of the re-hire list. So…even though I do better work than other employees…I am treated like scum because I am sick some days. That is the companies…”The Government of Canada’s” policy! Yeah...Canada ! My supervisors who know me personally…have always been very understanding and kind, and have actually apologized to have to give “The Talk” because they know I am a good employee…but policy makes them do it…and at the end of every term…we all end up crying…because they hate to treat me that way. And they know I am a good employee, and they know that I can’t help that I am sick. God bless the real people! But…I never know if they will phone me back to work…so far they have…they know I am a good employee…but I hold my breath! I am holding my breath right now for a call-back!
The sad fact is…that I work for the Federal Government…and they can’t even respect this as a disability! So the Canadian Government discriminates against employees with chronic illnesses with their own employees…how can they even empathize with the common citizens with chronic illnesses! And they should be the role model for the rest of the country for equal treatment of its employees. Shouldn’t they? Many of my co-workers are in agreement on this and are always sickeningly shocked about how I’ve been treated these past few years since I’ve had Lupus. Those co-workers have been my strong-hold! I couldn't have made it through work without those people who understand that I am in pain, and am trying to make it through my day! God Bless them!
But a big strike against the Government who is supposed to be the role model of Equal Opportunity!
Not only that…even though I have had this running seasonal job with the Government…I have been trying to find a full-time job. I have tried and tried…but when you have a history of sick days…or are asked during your interview about absences and have to send references…well, you never get a call back. Even when you explain your condition…NO JOB!!! How is this equal opportunity!!! It sucks big time!!!
I cannot find a full-time job anywhere because of my condition! I am completely frustrated trying to find work with Lupus. Nobody wants someone like me.
Equal Opportunity...It does not exist for someone like me! I am slowly becoming more disabled because of the Lupus and can understand the need for disability. But, I am sick of the inability to be treated like a human. If nobody will give me a job…even our own Government…how am I supposed to live? And to top it off...there is no options for people in our situation to get disability. We are in the fringes.
I can only speak for myself. I can work...but I can't tell you what day I can work. I can wake up one day and can't move...or one day I can. Today, I can put curlers in my hair...tomorrow...I can't even lift my hand to even brush my hair or my teeth. Or...sometimes...I get up to go to work, and I feel okay, and 2 hours into work...all my joints feel like a truck ran over me. How do you explain that to your boss? One hour is not the same as the next! How does one keep a job feeling this way? Only a Lupus sufferer knows this! This has caused great suffering for me and quite many days of depressions because of waking up and not being able to work. It is humiliating...because many people do not understand or even know about Lupus...so start rumours around work that I am faking some strange disease. There are whispers at work and signals that I am lower...and it spreads. And all I did was take a few sick days...but they turn it into something that I don't even know what...but, I know that they don't understand about Lupus and they think I am faking something. Which I cannot defend...except. if I could change my life to be what I was...I would in a flash. But, here I am...a Lupus patient! Helpless in the continuing failure of my bodily functions.!
How there is no financial safegaurd for this is unfathimable! This is not an illness that can be controlled! It is very unmanagable...and I have tried very hard to manage it...much to my frustration in doing so! It only gets worse year by year! And, as a person who has been very healthey and energetic and a go-getter that has had the misfortune of getting this condition....I completely agree that there should be some disability insurance given to those who suffer from this condition as well as others with similar conditions. Lupus, as well as other Auto-Immune conditions are an under educated, but growing, conditions that need to have more media attention!
There should defintely be some disability insurance for chronic sufferes of these conditions that are having a hard time living day to day and can't find employment due to their condition. Just because they aren't in a wheelchair does not make them no less disabled. It is a real illness...trust me. As a person who truly aches to be a whole person, but can't...We Need Help! I truly wish we didn't...But...We really do!
LORI NOAD
Sandra's Story
MY NAME IS SANDRA AND THIS IS MY STORY OF LIVING WITH LUPUS.
I was diagnosed with discoid Lupus in early 2000,
Since that day my health has drastically changed,
I truly believe I have suffered with it for years before any thing appeared on my face. I have always been extremely tired, where I will sleep when ever I could, also after a holiday, I thought I had sun burn on my ears but it took months for this to disappear.
And then in 1999 to have this legion appear on my nose, the same as on my ears, is Discoid Lupus.
My health, it seems is getting gradually worse as the years go by. I have been tested 4 times for SYSTEMIC LUPUS all negative,
I have Arthritis in my hands, neck, hips, knees and feet. I have had headaches for over 20 yrs, my muscles constantly ache, extreme fatigue and sleeplessness, red lace rash on my arms and legs, pain around my kidneys, memory problems, chest pain, easily bruising, sensitive to sun light, fingers and palms turning red, pins and needles in my arms and legs, IBS symptoms, lack of concentration, dizziness and oral, nasal and mouth ulcers.
And yet I don’t have SYSTEMIC LUPUS.
I’ve accused of being an alcoholic because of some of the symptoms I have, I’ve now been told it could be FIBROMYALGIA,
Which I believe is a condition that doe’s not exist, it is used by DR’S when they don’t know what’s wrong with you, I’ve been told by 3 different people connected to the health care system the same thing.
I feel that I am being branded a liar, and it’s all in my head.
I have people say you look so healthy, there’s nothing wrong with you. Just because you can’t see it doe’s not mean there’s nothing wrong.
Live a month in my shoes and you would know what it is like to live with this disease.
I work part time, but with all my heart I wish I could work full time, but with my Lupus even working part time is so difficult, and strength zapping that I cannot even muster the energy to cook or clean my house for my family.
This disease not only effects my life, but that of my husband and 2 kids.
The reason I am writing this is because,
I asked my DR if I could claim AISH or disability (in Alberta).
And he said NO, because I did not have a positive test result for SLE, and even if I did , it would not be worth applying because they would refuse me because I was not sick enough. And that my husband earned to much, if he earned to much I would not be working part time, now would I.
My point is that there are people with SLE, not able to work and they are being refused benefits, They are on a low income from there spouse. And would love to be able to have some sort of income coming in to their house hold, just to be able to afford little extras for their kids.
They are being refused time after time,
THE DISABILITY SYSTEM NEEDS TO BE SERIOUSLY LOOKED AT,
And that when we apply, our pain and suffering is taken seriously,
and that some of us, honestly and truly cannot work because we are so sick all the time, and is impossible to get out of bed with pain and fatigue.
I AM PLEADING WITH YOU FROM THE BOTTOM OF MY HEART,
PLEASE, PLEASE LOOK INTO AND UP GRADE THE DISABILITY SYSTEM,
THERE ARE TO MANY PEOPLE CLAIMING DISABILITY THAT COULD VERY EASILY WORK,
AND PEOPLE LIKE US WITH LUPUS THAT ARE FALLING THROUGH THE CRACKS, THAT NEED THIS EXTRA MONEY, BUT ARE BEING REFUSED.
THIS NEEDS TO BE SORTED FOR THE WHOLE OF CANADA, IT IS A COUNTRYWIDE PROBLEM.
WIFE, MOTHER AND LUPUS SUFFER.
SANDRA WAITE
I was diagnosed with discoid Lupus in early 2000,
Since that day my health has drastically changed,
I truly believe I have suffered with it for years before any thing appeared on my face. I have always been extremely tired, where I will sleep when ever I could, also after a holiday, I thought I had sun burn on my ears but it took months for this to disappear.
And then in 1999 to have this legion appear on my nose, the same as on my ears, is Discoid Lupus.
My health, it seems is getting gradually worse as the years go by. I have been tested 4 times for SYSTEMIC LUPUS all negative,
I have Arthritis in my hands, neck, hips, knees and feet. I have had headaches for over 20 yrs, my muscles constantly ache, extreme fatigue and sleeplessness, red lace rash on my arms and legs, pain around my kidneys, memory problems, chest pain, easily bruising, sensitive to sun light, fingers and palms turning red, pins and needles in my arms and legs, IBS symptoms, lack of concentration, dizziness and oral, nasal and mouth ulcers.
And yet I don’t have SYSTEMIC LUPUS.
I’ve accused of being an alcoholic because of some of the symptoms I have, I’ve now been told it could be FIBROMYALGIA,
Which I believe is a condition that doe’s not exist, it is used by DR’S when they don’t know what’s wrong with you, I’ve been told by 3 different people connected to the health care system the same thing.
I feel that I am being branded a liar, and it’s all in my head.
I have people say you look so healthy, there’s nothing wrong with you. Just because you can’t see it doe’s not mean there’s nothing wrong.
Live a month in my shoes and you would know what it is like to live with this disease.
I work part time, but with all my heart I wish I could work full time, but with my Lupus even working part time is so difficult, and strength zapping that I cannot even muster the energy to cook or clean my house for my family.
This disease not only effects my life, but that of my husband and 2 kids.
The reason I am writing this is because,
I asked my DR if I could claim AISH or disability (in Alberta).
And he said NO, because I did not have a positive test result for SLE, and even if I did , it would not be worth applying because they would refuse me because I was not sick enough. And that my husband earned to much, if he earned to much I would not be working part time, now would I.
My point is that there are people with SLE, not able to work and they are being refused benefits, They are on a low income from there spouse. And would love to be able to have some sort of income coming in to their house hold, just to be able to afford little extras for their kids.
They are being refused time after time,
THE DISABILITY SYSTEM NEEDS TO BE SERIOUSLY LOOKED AT,
And that when we apply, our pain and suffering is taken seriously,
and that some of us, honestly and truly cannot work because we are so sick all the time, and is impossible to get out of bed with pain and fatigue.
I AM PLEADING WITH YOU FROM THE BOTTOM OF MY HEART,
PLEASE, PLEASE LOOK INTO AND UP GRADE THE DISABILITY SYSTEM,
THERE ARE TO MANY PEOPLE CLAIMING DISABILITY THAT COULD VERY EASILY WORK,
AND PEOPLE LIKE US WITH LUPUS THAT ARE FALLING THROUGH THE CRACKS, THAT NEED THIS EXTRA MONEY, BUT ARE BEING REFUSED.
THIS NEEDS TO BE SORTED FOR THE WHOLE OF CANADA, IT IS A COUNTRYWIDE PROBLEM.
WIFE, MOTHER AND LUPUS SUFFER.
SANDRA WAITE
Daniel's Story
At 15 I was invited to join the h.school volleyball team. Before the month ended I was in Childrens Hospital. Within weeks I was diagnosed with Lupus Nephritis, and immediately put on dialysis. My symptom's were very acute. The medical staff tried numerous treatment's, and nothing seemed to work. Finally a combination of high-dosage pulse steroids, and chemotherapy was used to kick my Lupus into remission. By the time I was 22 I lost the remaining kidney function I had.. my kidney's shut down causing my blood-pressure to skyrocket, and I had a stroke (3-4 mins. of total vision impairment followed by multiple seizure's). I was back on dialysis again.. this time the complication's put me out of commission for about 3 year's. I needed a transplant which yes, I did get. A few years ago I developed chronic Gout in both feet, and issue's with my balance. I have a history of Gout on both sides of my family, but my elders didn't get it until they were north of 45. Despite my medical history I say that I don't suffer since could be worse (at least I'm not homeless and lost in Afghanistan being forced to have a meal with members of the Taliban, or a roady for a girl band)... instead I say that I live with Lupus.
Regards,
Daniel.
Regards,
Daniel.
Sue's Story
To whom this may concern, well I have to say I have never really felt normal. As a small child I was always tired and just didn't feel right. I did have a bad case of mononucleosis at age 11 and often wonder if this wasn't the cause of this disease, from there the migraines began. I wasn't actually diagnosed with Lupus until age 42 so I spent many years wondering what could be wrong with me. The fatigue I've always felt was and is so overwhelming that I found it so hard to keep up with my kid's and be the kind of mother I wanted to be but I did the best I could and I managed okay until I hit my late thirties and early forties. I have seen many specialists and it took what seemed forever to find someone who could diagnose my problem. I have had many tests from x-rays and scans, an mri, a spinal tap and every other test you can think of, some painful and some just plain embarrassing. Once my joints started to swell my blood work finally started to show what the problem was. Since then I have suffered with continuing migraines, facial pain, swollen painful joints, dental problems, irritable bowel syndrome, hair loss, chronic sinus problems, muscle pain and weakness, neurological symptoms, bladder problems, back spasms, a blood disorder, miscarriage, and skin problems. I have tried to work but have so many problems that hold me back. My husband has a severe case of rheumatoid arthritis as well but luckily he has found medication to keep it under control and he is able to work. This disease has robbed me of a normal life, the ability to help pay the bills and it's been impossible to buy our own home. To keep the house clean, the laundry done and meals on the table takes everything I have. One of the big problems is people can't see the illness and they think you look fine so you must feel fine, well except for the red cheeks when I am in a bad flare. I have had shoulder surgery, gallbadder surgery, hand surgery, nasal surgery, and have spent a fortune on my teeth only to lose them because most procedures don't work due to the illness. I am on many expensive medications that cause stomach and heart problems and God only knows what else but I have no choice if I choose to be able to walk and be as normal as I can. Luckily my kidneys haven't been affected. This is my story in short form as I am suffering with severe facial pain at this time and find it almost impossible to even concentrate.
Thanks for your time, Sue Sommerfeld.
Thanks for your time, Sue Sommerfeld.
Vyra's Story
Im 20 and I cant remember living one day without pain. I cant remember one night where I havnt woken up gasping for air or with seering pain going through my body. I was only eighteen months old when I was diagnosed with Juvinille Rehumatiod Arthritas still have it to this day my fingers right now as I type are swollen and ache. I was eleven when I was diagnosed with SLE Lupus they after 3 months of misdiagnosing me finaly found the fluid that was drowning my heart and lungs enabling me to go through months of not being able to breath eat or sleep and that was just the inital diagnosis. I was put on prednizone to help with the fluid only it didnt just help it also damaged it lowered my dencity in my bones so by twelve I had already fractured my back twice,..lower vertabra and hairline fractures in my feet two more times fracturing the same vertabra to go before the calcium infusions stopped my bones from breaking. I gained alot of weight that nine years later I still cant work off and it kills my arthritas sitting standing even just sleeping is painfull with the weight putting extra pressure on my joints most nights making my body go numb and tingle. Ive had constant and painfully costacondritas (swelling and inflamation of mussles in ribcage pushing aginst the ribs) sence I was eleven a sideeffect of lupus and stress. Ive had full body rashes constant fatigue and nausia, Extreme migrains, biopsy after biopsy pain after pain flair after flair and all to deal with on my own sence I was 15 when I was out on my own battling everything plus struggling to keep a roof over my head not wanting to make anyone deal with the situation but the one who had no choice, the one forced to,..me. Im 20 still in the same situation only with even more pain and trying to find help to cope mentally and physically I am being told at least a year wait or more. I need help now but I dont even have doctors that listen much less help. My disabillity is all internal inless you really know me or see me home curled up into a ball shaking throwing up and crying in pain youd never know I look just everyone elts day to day. People dont believe im sick or do and dont understand. I Live in new brunswick canada and I have never even met anyone elts with Lupus before there is no help here but im too sick to just up and go. My family tries to understand but none of them have cronic pain and they like everyone elts have a hard time understanding. My mother gave up most of her last nineteen years to care for me and only in the last 7 years has been able to go back to work but only sence I left home has she had time to do so. My family has alot of stress and fears when it comes to me being sick and want to help but feel helpless so this leads to depression and its hard for us to get along because although I am know and feel that I am sick I want to care for myself have my own life and live on my own but they want me home so they can watch over me. Most times I want to just get in a car and drive far away find others like me find a place where I can get help but im to sick pain wise emotionaly everything I feel like im dying slowly as I get sicker and more pain I feel like more of me is gone, just disapears. I am right now on medical leave I cant keep a job for more then three months, I love working and I am a hard worker but three months is the longest I can go without a flare right now I am fighting for disability assistance and low income houseing but its a struggle. Theres no help here All I can do is tell my story and hope people learn that there are people like me who look normal but are in pain and sick that understanding happens not pitty. And hope that I find a lupus center or someone who can help get rid of the pain for good one day. I after going through everything and still having no options I cant work I cant even get a Doctor to listen long enough to find proper treatment I feel like my only option is to admit my self to a phych. ward just so i can get someone to listen and maybe help me find out where i can go to help with pain with independance. Right now I have no home but I do have alot of pain. It bugs me that i feel like its my only option but i cant think of anything elts. Im so sick and tired and tired of being sick. Im depressed and alone and in pain with no anything to turn to. What should I do? I have a cronic termenal non curable disability and although there are many others like me I feel alone and dont know how to fight to live other then keep up on medication which are costing 400$ a month give or take pain killers gravol cold medication and anything elts I might need with my compramised ammune system. I cant even afford vegtables or vegtable juice to give me extra vitamins because of my lack of money home and job. I may no longer be in a wheel chair, I may not show my disability physically inless I have butterfly rash I may not be bed ridden or living in the hospital but I am disabled and getting worse by the year with lack of help for people like me especially in smaller citys and towns we need more awarness more medical funding for resurch more help for houseing and medication costs income and disability assistance. It may not seem like much but when you have an illness that makes you proud when you have enough energy to wash your hair its hard to have any gainfull employment and just because the public cant physically see it doesnt meen we dont need the help.
Vyra Taylor
Vyra Taylor
Jennifer's story
Living with Lupus My name is Jennifer. I am 28 years old and have been living with Lupus for 13 years. This is my story:
As a child, I was very sick. I had my tonsils out at 5, hospitalized for pneumonia at least once and double pneumonia once, mono, reynod's, and got sick very very easily. I can't remember what else, I just know there was always something wrong. When I slept, I slept like the dead, even as a child. This being said, hindsight is of course, 20/20.
I was 14 years old and woke up one day to find a dark red blotch on my face, just under my right eye on my cheekbone. Having been blessed with incredible skin, I was not prone to acne, even as a teenager, so this was odd. The mark stayed for a couple of weeks and in that time my mother took me to the doctor to have it looked at and then to a dermatologist. I remember them asking me weird questions that I didn't think related at all to the red mark on my face; they were asking me things like, "are you stiff at all? Are you in any pain? Soreness in any joints?" No was the answer to all of those, except for the question, "do you find yourself tired more than usual?" Well of course, I was a teenager..for the past couple of years I had noticed that I was exhausted most of the time. I avoided physical activity like the plague because I knew that I would be worn out 5 minutes in, so why bother? I wasn't worried about my physical condition; after all, I was 5'2", 14 years old and 75 lbs. I thought that was great!
Time went by and my parents were on my case about me wanting to sleep all the time, falling behind when we were out walking around and about my severe lack of appetite. They were constantly accusing me of just not caring, my lack of effort and how they thought I was trying to "escape" by sleeping all the time. (of course, they thought this was all typical horrible teenage behaviour). They accused me of being anorexic, which trust me, I was not.I really enjoyed eating, its just after 2 or 3 bites of anything, I was full! I'd eat several times a day, very small amounts. I was frustrated by this too. I wanted to be able to sit down at dinner time with my family and eat everything on my plate. I was never able to and every night my parents would yell at me for it.
A few weeks later, the mark on my face still there, now with a dark purple hue and getting bigger by spreading across my nose and to my other check I awoke one morning and was rather stiff. My entire body hurt, but I just chalked this up to the fact that I must have slept wrong. The "kinks" as I thought they were didn't go away all day. I made my way through my day at school, but couldn't wait to get to bed. This went on for 3 days.
Day 3 was a day I will never forget. It took me 4 minutes just to sit up in my bed. Another couple of minutes to swing my legs down to the floor and I was barely able to walk to get to my bedroom door. It felt like I hadn't moved for months and now I was trying to break out of some mould. It hurt so much. I was stuck in my room too.I was unable to grasp my door knob to open my bedroom door. I had to call for help. My Mom came in with great concern and asked me if I wanted to go to the hospital. Pride in the way, I declined and insisted that I must have slept wrong again. Deep down I knew this wasn't the case, but what else could it be? I made my way to school.
I hadn't even made it to first period yet. I was trying to get into my locker and couldn't turn the dial on my padlock. I was so exhausted I considered sitting down on the floor beside my locker and grabbing a quick nap.this obviously not being a wise choice I called home. My Mom answered the phone and all I said was, "I'm ready to go to the hospital now please." She came and got me and off we went..
I remember little of what went on the rest of that day. I remember I had on a grey t-shirt and blue jeans, my hair was down as I was unable to put it up (how I usually wear it) and I had slip on shoes. They did a LOT of blood work, lots of DNA testing and asked me lots of questions. I slept while we waited. Finally, after several hours, the doctors came back and were speaking to my mother. I was to be admitted that night. This was when I became slightly worried. No one had any answers and all they told me was that they were testing for a number of different things.
Time passed at a very slow rate. My mother, who my heart bled for, stayed with me in the hospital. She slept on the couch and it was evident to me that she was worn right out. I had been put on an array of meds, so I was fine.I was still stiff, but could at least walk around. Most of the time, I was hooked up to an IV. I was giving blood at least twice a day as well as urine. They wanted it all! Three weeks went by of this.February 14, 1995. I was wandering around the hospital and was sad that my mother was spending Valentine's Day with me at the hospital instead of with Dad. I wandered down to the gift shop and bought my Mom a red carnation and a Valentine's Day card. I took my gift upstairs back to my room to find my Mom looking more distraught than usual with tear stains down her face, and 2 doctors standing there. I insisted that I was fine, and wished my mother a happy Valentine's Day. She hugged me so tightly...The 4 of us sat down and the doctors explained that I have just been diagnosed with Systemic Lupus Erythematosus. They then began explaining what that was...
Shortly thereafter, whatever medications I had been on were changed. I was now on 60 mg of Prednisone and 400 mg of Plaquinil.drugs I would soon learn a great deal about. My appetite finally increased to say the least. Shortly after my diagnosis, I was released from the hospital. I would return to high school having left 75 lbs, returning at 120 lbs..at 14 years old, the diagnosis was nothing; it was the 45 lb weight gain and the VERY round face that I was most concerned about. Before my return to school, my parents had a meeting with all my teachers. My teachers had done an outstanding job of preparing my classmates for my return and fortunately, I only had to deal with the stares and lots of people asking, "are you ok?"
Throughout my teenage years, adjusting to living with a chronic illness took some time. On top of the regular battles that teenagers go through, I had this very extraordinary situation to deal with. It affected me at school in that my levels of concentration and memory loss frustrated me more than anything. I also regularly dealt with the issue of slurred speech, or not being able to get the words out. My weight fluctuated with my medication, but oddly, I didn't let that bother me as much. I knew it was the prednisone and that the better care I took of myself, the sooner I'd get on a lower dose.
I went through the teenage years doing what most teenagers do. I smoked, I did drugs, I drank and partied, however all within great moderation. I never let my peers know that I wasn't as drunk as them, or as high as them or whatever. I was so in tune with my body and knew what I could and could not handle. No one else needed to know that. I also wore a medic alert necklace and never, ever took it off.
As an adult, I learned that it was best to let my teachers/employers know right away that I am living with a chronic illness. Often, I'd have to take them aside and have a sit down chat explaining what SLE was and how it affected me here at school/work. I have been very fortunate to have always been surrounded by people who were at least willing to listen. I discovered that having a support network (family, friends) was invaluable as well as knowing enough to be able to answer questions. When living with a chronic illness, you get to know more about your illness than your doctors. Lupus affects everyone differently, so only you know how it really affects you each and every day. This took me a while to figure out, but once I did, life became easier to handle.
Today, at 28 years old and a self professed pro at living with Lupus, I am still on Prednisone and Plaquinil. I am also seeing a Naturopath, something I wish I'd done years ago. I have learned that I can control my health a lot better by knowing what foods I can and cannot have.turns out I'm allergic to gluten among other things. I wish I'd known that a few years ago too! I have of course, not included anywhere near all of the struggles of living with Lupus. This was just a general "here's how it started" story.
Today I am happily married to a wonderful man, my parents and brother are all healthy (no history of Lupus in the entire family) and I live an active life by eating right, exercising and focusing on my frame of mind. I'm a big believer in "mind over matter." I am not a victim, but a survivor. I consider this just another challenge and think that if the Big Guy Upstairs didn't think I could handle it, He wouldn't have dealt me these cards.
My heart breaks when I hear of someone else being diagnosed with Lupus because I know what an incredibly difficult struggle it is. Tell people you have Lupus because chances are, they know someone who has Lupus too. Its not easy an easy way to live, but its not impossible. My biggest advice to those who are living with Lupus and to those who are newly diagnosed, find out as much as you can. Learn about your illness. Listen to your body. Its ok to give in some days. Reach out for a hug, and come back tomorrow or even the next day, well rested and smiling!
Jennifer
As a child, I was very sick. I had my tonsils out at 5, hospitalized for pneumonia at least once and double pneumonia once, mono, reynod's, and got sick very very easily. I can't remember what else, I just know there was always something wrong. When I slept, I slept like the dead, even as a child. This being said, hindsight is of course, 20/20.
I was 14 years old and woke up one day to find a dark red blotch on my face, just under my right eye on my cheekbone. Having been blessed with incredible skin, I was not prone to acne, even as a teenager, so this was odd. The mark stayed for a couple of weeks and in that time my mother took me to the doctor to have it looked at and then to a dermatologist. I remember them asking me weird questions that I didn't think related at all to the red mark on my face; they were asking me things like, "are you stiff at all? Are you in any pain? Soreness in any joints?" No was the answer to all of those, except for the question, "do you find yourself tired more than usual?" Well of course, I was a teenager..for the past couple of years I had noticed that I was exhausted most of the time. I avoided physical activity like the plague because I knew that I would be worn out 5 minutes in, so why bother? I wasn't worried about my physical condition; after all, I was 5'2", 14 years old and 75 lbs. I thought that was great!
Time went by and my parents were on my case about me wanting to sleep all the time, falling behind when we were out walking around and about my severe lack of appetite. They were constantly accusing me of just not caring, my lack of effort and how they thought I was trying to "escape" by sleeping all the time. (of course, they thought this was all typical horrible teenage behaviour). They accused me of being anorexic, which trust me, I was not.I really enjoyed eating, its just after 2 or 3 bites of anything, I was full! I'd eat several times a day, very small amounts. I was frustrated by this too. I wanted to be able to sit down at dinner time with my family and eat everything on my plate. I was never able to and every night my parents would yell at me for it.
A few weeks later, the mark on my face still there, now with a dark purple hue and getting bigger by spreading across my nose and to my other check I awoke one morning and was rather stiff. My entire body hurt, but I just chalked this up to the fact that I must have slept wrong. The "kinks" as I thought they were didn't go away all day. I made my way through my day at school, but couldn't wait to get to bed. This went on for 3 days.
Day 3 was a day I will never forget. It took me 4 minutes just to sit up in my bed. Another couple of minutes to swing my legs down to the floor and I was barely able to walk to get to my bedroom door. It felt like I hadn't moved for months and now I was trying to break out of some mould. It hurt so much. I was stuck in my room too.I was unable to grasp my door knob to open my bedroom door. I had to call for help. My Mom came in with great concern and asked me if I wanted to go to the hospital. Pride in the way, I declined and insisted that I must have slept wrong again. Deep down I knew this wasn't the case, but what else could it be? I made my way to school.
I hadn't even made it to first period yet. I was trying to get into my locker and couldn't turn the dial on my padlock. I was so exhausted I considered sitting down on the floor beside my locker and grabbing a quick nap.this obviously not being a wise choice I called home. My Mom answered the phone and all I said was, "I'm ready to go to the hospital now please." She came and got me and off we went..
I remember little of what went on the rest of that day. I remember I had on a grey t-shirt and blue jeans, my hair was down as I was unable to put it up (how I usually wear it) and I had slip on shoes. They did a LOT of blood work, lots of DNA testing and asked me lots of questions. I slept while we waited. Finally, after several hours, the doctors came back and were speaking to my mother. I was to be admitted that night. This was when I became slightly worried. No one had any answers and all they told me was that they were testing for a number of different things.
Time passed at a very slow rate. My mother, who my heart bled for, stayed with me in the hospital. She slept on the couch and it was evident to me that she was worn right out. I had been put on an array of meds, so I was fine.I was still stiff, but could at least walk around. Most of the time, I was hooked up to an IV. I was giving blood at least twice a day as well as urine. They wanted it all! Three weeks went by of this.February 14, 1995. I was wandering around the hospital and was sad that my mother was spending Valentine's Day with me at the hospital instead of with Dad. I wandered down to the gift shop and bought my Mom a red carnation and a Valentine's Day card. I took my gift upstairs back to my room to find my Mom looking more distraught than usual with tear stains down her face, and 2 doctors standing there. I insisted that I was fine, and wished my mother a happy Valentine's Day. She hugged me so tightly...The 4 of us sat down and the doctors explained that I have just been diagnosed with Systemic Lupus Erythematosus. They then began explaining what that was...
Shortly thereafter, whatever medications I had been on were changed. I was now on 60 mg of Prednisone and 400 mg of Plaquinil.drugs I would soon learn a great deal about. My appetite finally increased to say the least. Shortly after my diagnosis, I was released from the hospital. I would return to high school having left 75 lbs, returning at 120 lbs..at 14 years old, the diagnosis was nothing; it was the 45 lb weight gain and the VERY round face that I was most concerned about. Before my return to school, my parents had a meeting with all my teachers. My teachers had done an outstanding job of preparing my classmates for my return and fortunately, I only had to deal with the stares and lots of people asking, "are you ok?"
Throughout my teenage years, adjusting to living with a chronic illness took some time. On top of the regular battles that teenagers go through, I had this very extraordinary situation to deal with. It affected me at school in that my levels of concentration and memory loss frustrated me more than anything. I also regularly dealt with the issue of slurred speech, or not being able to get the words out. My weight fluctuated with my medication, but oddly, I didn't let that bother me as much. I knew it was the prednisone and that the better care I took of myself, the sooner I'd get on a lower dose.
I went through the teenage years doing what most teenagers do. I smoked, I did drugs, I drank and partied, however all within great moderation. I never let my peers know that I wasn't as drunk as them, or as high as them or whatever. I was so in tune with my body and knew what I could and could not handle. No one else needed to know that. I also wore a medic alert necklace and never, ever took it off.
As an adult, I learned that it was best to let my teachers/employers know right away that I am living with a chronic illness. Often, I'd have to take them aside and have a sit down chat explaining what SLE was and how it affected me here at school/work. I have been very fortunate to have always been surrounded by people who were at least willing to listen. I discovered that having a support network (family, friends) was invaluable as well as knowing enough to be able to answer questions. When living with a chronic illness, you get to know more about your illness than your doctors. Lupus affects everyone differently, so only you know how it really affects you each and every day. This took me a while to figure out, but once I did, life became easier to handle.
Today, at 28 years old and a self professed pro at living with Lupus, I am still on Prednisone and Plaquinil. I am also seeing a Naturopath, something I wish I'd done years ago. I have learned that I can control my health a lot better by knowing what foods I can and cannot have.turns out I'm allergic to gluten among other things. I wish I'd known that a few years ago too! I have of course, not included anywhere near all of the struggles of living with Lupus. This was just a general "here's how it started" story.
Today I am happily married to a wonderful man, my parents and brother are all healthy (no history of Lupus in the entire family) and I live an active life by eating right, exercising and focusing on my frame of mind. I'm a big believer in "mind over matter." I am not a victim, but a survivor. I consider this just another challenge and think that if the Big Guy Upstairs didn't think I could handle it, He wouldn't have dealt me these cards.
My heart breaks when I hear of someone else being diagnosed with Lupus because I know what an incredibly difficult struggle it is. Tell people you have Lupus because chances are, they know someone who has Lupus too. Its not easy an easy way to live, but its not impossible. My biggest advice to those who are living with Lupus and to those who are newly diagnosed, find out as much as you can. Learn about your illness. Listen to your body. Its ok to give in some days. Reach out for a hug, and come back tomorrow or even the next day, well rested and smiling!
Jennifer
Natalie's story
My name is Natalie and I'm 40. I'm one of the lucky ones. I was diagnosed early.
I think the thing that most people don't realize about Lupus, is the myriad of satellite ailments, that come along with it. It's never JUST Lupus. For me, its Hemolytic Anemia, Anti-cardiolipin antibody syndrome, Anti-phospholipid antibody syndrome, Reynaud's Phenomenon, Fibromyalgia, Sjogren's syndrome, Seizures, Congestive heart failure, chronic Pericarditis, and 'unspecified' anxiety disorders.
When I was told that my anti-anxiety drugs were were interfering with my Lupus drugs, I had to stop them. It wasn't long before working became a source of daily terror, for me. My doctor tried to get disability for me, on the basis, of Lupus, which was, by far, my most serious medical complaint, but I was rejected. I finally ended up getting accepted, on the basis of my anxiety disorders.
Since that time, which was in 2000, I've had a heart attack, 2 strokes, several bouts of pericarditis, all of which have had ties to Lupus, and many flare ups of Lupus that have required treatment.
I find it frustrating, and a slap in the face, that Lupus isn't considered a serious enough illness that we cannot get disability. Flare ups are brought on by stress, fatigue, sunlight and allergies. Lupus can affect our skin, our joints or brains, or a combination of any of these. Lupus started in my joints, and has now moved to my brain.
Life with Lupus is difficult. Trying to get through each day, struggling with the knowledge that you can't get disability for a disease that can kill you in a heartbeat, is devastating. It can take years, to get a definitive diagnosis, of Lupus, because of the confusing array of symptoms. So, after years of suffering, with the not knowing of what is causing your pain, and numbing fatigue, you get a diagnoses, and hope to finally get help from disability insurance. Not a chance.
So, we're left to rely on our satellite illnesses, to find our way to relief. I just feel like stamping my feet and shouting, "Its just not FAIR!" for all the folks who are still trying to get disability, and are still getting turned down. I understand where they're coming from.
I think the thing that most people don't realize about Lupus, is the myriad of satellite ailments, that come along with it. It's never JUST Lupus. For me, its Hemolytic Anemia, Anti-cardiolipin antibody syndrome, Anti-phospholipid antibody syndrome, Reynaud's Phenomenon, Fibromyalgia, Sjogren's syndrome, Seizures, Congestive heart failure, chronic Pericarditis, and 'unspecified' anxiety disorders.
When I was told that my anti-anxiety drugs were were interfering with my Lupus drugs, I had to stop them. It wasn't long before working became a source of daily terror, for me. My doctor tried to get disability for me, on the basis, of Lupus, which was, by far, my most serious medical complaint, but I was rejected. I finally ended up getting accepted, on the basis of my anxiety disorders.
Since that time, which was in 2000, I've had a heart attack, 2 strokes, several bouts of pericarditis, all of which have had ties to Lupus, and many flare ups of Lupus that have required treatment.
I find it frustrating, and a slap in the face, that Lupus isn't considered a serious enough illness that we cannot get disability. Flare ups are brought on by stress, fatigue, sunlight and allergies. Lupus can affect our skin, our joints or brains, or a combination of any of these. Lupus started in my joints, and has now moved to my brain.
Life with Lupus is difficult. Trying to get through each day, struggling with the knowledge that you can't get disability for a disease that can kill you in a heartbeat, is devastating. It can take years, to get a definitive diagnosis, of Lupus, because of the confusing array of symptoms. So, after years of suffering, with the not knowing of what is causing your pain, and numbing fatigue, you get a diagnoses, and hope to finally get help from disability insurance. Not a chance.
So, we're left to rely on our satellite illnesses, to find our way to relief. I just feel like stamping my feet and shouting, "Its just not FAIR!" for all the folks who are still trying to get disability, and are still getting turned down. I understand where they're coming from.
Christine's Story
My name is Christine and I am 36 years old. I am a wife, a mother of 2 boys, a full time daycare provider and a full time Lupus sufferer.
I have been learning about my Lupus & symptoms since I was about 13. When I was 14 I had major knee surgery which caused a DVT which led to lung problems and seizures, which opened the door for my Lupus to show it’s many faces.
At 16, I made the decision to drop out of school due to not being well enough to attend and with the seizures not being controlled; I wasn’t comfortable being in public. I spent the next 4+ agonizing years trying to deal with fainting spells, seizures, memory loss, headaches, unexplained aches & pains, fatigue, and severe depression. The worst was trying to ‘convince’ the so called specialists that there was something wrong with me. I went through Doctor after Doctor .. tests after tests … hospital stay after hospital stay .. additional symptoms after symptoms … still no concrete answers.
I seriously felt like I was actually loosing my mind and that no-one understood or cared to understand what I was going through. I felt alone, crazy and I truly second guessed myself … I really started to believe what all the Doctors were telling me – “it is all in your head and you are not sick”. Thank goodness there was a tiny little voice in my head that kept me grounded and kept me strong enough to continue on with my fight to find out what was wrong.
It took quite some time to get my seizures under control (I was taking the maximum seizure medication you could take – Dilantin & Epival) but once they were controlled I was able to finish high school (through correspondence), continue on & graduate from College and finally get out in public again and get a job.
Then the real issues started.
I had my first TIA at 21 (1st of 6 TIA’s). That started the high doses of coumadin and the endless visits to the hospital to get blood taken 5 times a week for 2+ years after which dropped down to 3 times a week.
After years of tests & more tests, continual medication changes, a few things were discovered:
1) I have an absorption issue with all medications.
2) I was diagnosed with Antiphospolipid Antibodies with Lupoid tendencies.
3) I was getting worse NOT better … more & more symptoms from the Lupus confirmation list were starting to show & become relevant to my health issues.
I was finally diagnosed with SLE, fibromyalgia, arthritis, sensitivity to pleurisy & pericarditis, chronic migraines, knee replacement candidate at the age of 25, Raynaud’s disease, lymph node enlargements, chronic fatigue, sun sensitivity, extreme sensitivity to repeated sprains, nerve damage, severe mouth sores, memory problems & trouble thinking, TIA’s, strokes, depression and many, many, many other ailments & symptoms.
Currently I am on 4 aspirin daily, Toradol when needed, Oracort when needed and when I have a flare I will go on a round of anti-inflammatory medication or other related medications to treat the flare/symptom.
I deal with the ups & downs of Lupus on a daily basis … some days are good, some days are just ok (tolerable) and there are some days where I am just unable to function at all .. either due to the pain, the fatigue, headaches or just the everyday problems related to Lupus.
I have been learning about my Lupus & symptoms since I was about 13. When I was 14 I had major knee surgery which caused a DVT which led to lung problems and seizures, which opened the door for my Lupus to show it’s many faces.
At 16, I made the decision to drop out of school due to not being well enough to attend and with the seizures not being controlled; I wasn’t comfortable being in public. I spent the next 4+ agonizing years trying to deal with fainting spells, seizures, memory loss, headaches, unexplained aches & pains, fatigue, and severe depression. The worst was trying to ‘convince’ the so called specialists that there was something wrong with me. I went through Doctor after Doctor .. tests after tests … hospital stay after hospital stay .. additional symptoms after symptoms … still no concrete answers.
I seriously felt like I was actually loosing my mind and that no-one understood or cared to understand what I was going through. I felt alone, crazy and I truly second guessed myself … I really started to believe what all the Doctors were telling me – “it is all in your head and you are not sick”. Thank goodness there was a tiny little voice in my head that kept me grounded and kept me strong enough to continue on with my fight to find out what was wrong.
It took quite some time to get my seizures under control (I was taking the maximum seizure medication you could take – Dilantin & Epival) but once they were controlled I was able to finish high school (through correspondence), continue on & graduate from College and finally get out in public again and get a job.
Then the real issues started.
I had my first TIA at 21 (1st of 6 TIA’s). That started the high doses of coumadin and the endless visits to the hospital to get blood taken 5 times a week for 2+ years after which dropped down to 3 times a week.
After years of tests & more tests, continual medication changes, a few things were discovered:
1) I have an absorption issue with all medications.
2) I was diagnosed with Antiphospolipid Antibodies with Lupoid tendencies.
3) I was getting worse NOT better … more & more symptoms from the Lupus confirmation list were starting to show & become relevant to my health issues.
I was finally diagnosed with SLE, fibromyalgia, arthritis, sensitivity to pleurisy & pericarditis, chronic migraines, knee replacement candidate at the age of 25, Raynaud’s disease, lymph node enlargements, chronic fatigue, sun sensitivity, extreme sensitivity to repeated sprains, nerve damage, severe mouth sores, memory problems & trouble thinking, TIA’s, strokes, depression and many, many, many other ailments & symptoms.
Currently I am on 4 aspirin daily, Toradol when needed, Oracort when needed and when I have a flare I will go on a round of anti-inflammatory medication or other related medications to treat the flare/symptom.
I deal with the ups & downs of Lupus on a daily basis … some days are good, some days are just ok (tolerable) and there are some days where I am just unable to function at all .. either due to the pain, the fatigue, headaches or just the everyday problems related to Lupus.
Marg's Story
"Hi Kim, my name is Marg and I have been diagnosed with Lupus since August 2007. Before January 07 I knew very little of Lupus. Now I know too much I think. I am currently on sick leave and it will be two years in July. Every morning I have to decide what tasks are "must dos" as I know I will not have the strength or ability to do everything I should be doing. Some days Lupus takes away my fine and gross motor skills and leaves me exhausted. Other days my body feels like I have been hit by a bus over and over again. My family does their best to understand but our life is not the same. I do not play sports anymore with my old teams or my kids. We used to ski, golf and play soccer, just to name a few. Now I sit frustrated on the sidelines...that is if I am well enough to attend. Come July I will have to fight in order to be granted LTD. It is not that I don't want to work , I would like nothing better. Unfortunately I can't as each day brings something else and not alwayssomething good. Lupus affects families, friends and everyone around us. It has brought pain and frustration to not only me but also my family. This is a short version of my story, I hope it helps.
Marg Hart-Nadon"
Marg Hart-Nadon"
Kathi's Story
I consider myself fortunate. I was diagnosed with Lupus in July 1999, after a three year struggle to find out “what was wrong with me”. Many people struggle 10 -15 years before being diagnosed.
I consider myself fortunate. My symptoms are fairly mild. I have had symptoms as far back as my early teens, rarely have they been enough to put me in bed, and only one trip to the ER. Many of my fellow “Lupies” spend weeks confined to their beds or months in the hospital facing life-threatening complications. Some die.
I consider myself fortunate. I have friends and family who try to understand my bad days and help me to celebrate the good. Not every Lupie has the same support. I consider myself fortunate. I take one medication daily to keep my symptoms (mostly) under control. Many Lupus sufferers have their own pharmacies including chemotherapy drugs which have their own horrible side effects.
I consider myself fortunate
Kathi
I consider myself fortunate. My symptoms are fairly mild. I have had symptoms as far back as my early teens, rarely have they been enough to put me in bed, and only one trip to the ER. Many of my fellow “Lupies” spend weeks confined to their beds or months in the hospital facing life-threatening complications. Some die.
I consider myself fortunate. I have friends and family who try to understand my bad days and help me to celebrate the good. Not every Lupie has the same support. I consider myself fortunate. I take one medication daily to keep my symptoms (mostly) under control. Many Lupus sufferers have their own pharmacies including chemotherapy drugs which have their own horrible side effects.
I consider myself fortunate
Kathi
Tara's Story
My name is Tara , I am 30 and have discoid lupus. I have had the disease for 11 years. I haven't yet been denied disablity through the government, because I haven't yet applied for it. However, awful as this may sound, I already expect that I will eventually have to apply for it and expect to be denied. I have just lost my job. As of November 14 2008 I would have been there 2.5 years, on contract (they keep everyone on contract for 3 years and then hire you on) . Anyway, with my lupus I also have extreme fatigue, arthritis, and depression. Not to mention how I feel emotionally about myself because I have over 40 lesions on my face alone. So my story is this....I went off on medically supported short term disablity leave through the bank from May until June--this was because I was diagnosed with depression, as many people are that face a chronic illness like lupus. In July I had to go off of work again, this time due to alupus flare up. (Very common in the summer months for my kind of lupus). So I was off from July until I received a letter in the mail from my manager stating that my contract wasn't going to be renewed, and my employment (and of course benefits) would end as of September 30th. Luckily I just got approved for EI which just came through today! (What a relief!)
I am writing you this story though, because I feel like I've been rejected and wrongfully dismissed from my job due to my disability. As an employee there, you are evaluated based on your job performance, and I was rated a 'distinguished' employee and was compensated financially for that rating. My question/what I am most pissed off about is that how can I be rated a distinguished employee and then when I am going through a really hard difficult time, they let me go with the excuse of "work shortage/no work/upcoming department changes."I still have friends there and have been told that they've already hired someone to 'replace me'. So there's no work for Tara in the dept. but there's work for someone else? I would love to expose them for what they are money hungry assholes with no compassion for human life. Anyway....it's because of them and how they've treated me that I will be applying for disability. I think what most people with lupus feel is that, because they 'look fine on the outside' it's hard for others to truly know what the lupie is feeling on the inside. I guess in a way, my kind of lupus shows how I feel on the inside because I have all these f'ing lesions all over my face. Here's what I go through because of my lupus.....
a) So I literally wake up in the morning, and don't even recognize who is staring back at me in the mirror.
b) I am afraid to let anyone see what I really look like without my special camoflauging make up on. I feel like a lepor.
c)My husband hasn't even seen me without my make up on, I wear it to bed everynight. Obviously this lack of self confidence hinders our sex life.
d)I can not go in the sun, and when I do I must wear 50 SPF
e)it seems like I can't avoid flourescent lights, they were at work too, so that didn't help.
f) I don't go swimming (haven't been since I found out that I have lupus) because my make up will come off, and people will be rude to me or think it's contagious or something, and I don't like feeling vulnerable exposing myself like that, because the lesions are all over my upper arms too.
g) due to the lesions on my arms I always have to wear long sleeves, no tank tops etc. I honestly don't think that people have ANY idea what this is like as a young woman who is hindered by her appearance. I used to play baseball but had to quit that because if it rained during a game, I would absolutely panic thinking that my make up is going to come off and people are going to see my ugly face underneath
h)Some days (not all days!) I feel soooooo sore, to the point that I can hardly type on the keyboard
i) some day (not all) my muscles are so sore that my cat can't even sit on my lap
j) some days I am so sore that my husband can't even give me a massage because although I am sore in my neck and shoulders and think I need a massage, it is far to painful to let him do it. It feels like I am bruised all over and he's massaging my bruises :
k) I have had to go on anti depressants last year because I have such a horrible view on life and myself now
l) I have lost my job because of this disease, and I have always been a really hard worker, who enjoyed working. I've held a steady job since I was 14 and have NEVER been fired-until now.
m)I don't go camping anymore, because of the sun exposure, and my inability to be able to go swimming, so I miss out on that. I don't go to the beach anymore either.
n) sometimes (and other people have told me what others say) people think that I simply don't want to work, instead of the truth that I can not work when I am sick. Others have told me what people have said, 'she looks fine" well if they only knew what it feels like on the inside.
o)if I do anything physical (say for example rake the leaves) I am SORE for at least 3 days afterwards. unfortunately this includes having sex, I am really sore over my entire body after doing anything physical.
p)I am soooo tired all of the time. I can go to bed at 11 with my husband, and not get up until 11am the next day. I need at least 4-5 more hours of sleep than a 'normal person'---hence why it's so hard to hold a job, as I was always calling in sick.
q)the pills I've been prescribed are called plaquenil, for the lupus. they haven't improved anything. how do you think it feels to take medicine religiously for 11 years, and yet my disease keeps getting worse? It started out as one lesion on my right cheek, and now it's spread to over 40 on my face alone.
r) I am really really scared to have a baby, because I know it is only going to get worse
s) for my wedding which was just over a month ago, I was having panic attacks just thinking about our first kiss....what if he kisses me too hard, and rubs all my make up off my nose, than I am going to be exposed in front of everyone. I was JUST dreading it. That's not how your freakin wedding day should be. But it just goes to show how damaging this disease is.
t) I've had people say to me...'did you get bit by a spider or something?"or "Did someone put a cigarette out on your face'.I will never ever ever forget those comments. They've literally scarred me for life.
u) medical benefits do not cover camoflauging make up. How ridiculous. It's not that I want them to buy me my liipstick and mascara, however, I feel like a burn victim, my face is now deformed and physically changed.
v) medical benefits don't supply sunblock, which is mandatory for my condition.
Anyway, I was trying to let you know how I feel and how my experience is with lupus everyday.
Sincerely, Tara .
I am writing you this story though, because I feel like I've been rejected and wrongfully dismissed from my job due to my disability. As an employee there, you are evaluated based on your job performance, and I was rated a 'distinguished' employee and was compensated financially for that rating. My question/what I am most pissed off about is that how can I be rated a distinguished employee and then when I am going through a really hard difficult time, they let me go with the excuse of "work shortage/no work/upcoming department changes."I still have friends there and have been told that they've already hired someone to 'replace me'. So there's no work for Tara in the dept. but there's work for someone else? I would love to expose them for what they are money hungry assholes with no compassion for human life. Anyway....it's because of them and how they've treated me that I will be applying for disability. I think what most people with lupus feel is that, because they 'look fine on the outside' it's hard for others to truly know what the lupie is feeling on the inside. I guess in a way, my kind of lupus shows how I feel on the inside because I have all these f'ing lesions all over my face. Here's what I go through because of my lupus.....
a) So I literally wake up in the morning, and don't even recognize who is staring back at me in the mirror.
b) I am afraid to let anyone see what I really look like without my special camoflauging make up on. I feel like a lepor.
c)My husband hasn't even seen me without my make up on, I wear it to bed everynight. Obviously this lack of self confidence hinders our sex life.
d)I can not go in the sun, and when I do I must wear 50 SPF
e)it seems like I can't avoid flourescent lights, they were at work too, so that didn't help.
f) I don't go swimming (haven't been since I found out that I have lupus) because my make up will come off, and people will be rude to me or think it's contagious or something, and I don't like feeling vulnerable exposing myself like that, because the lesions are all over my upper arms too.
g) due to the lesions on my arms I always have to wear long sleeves, no tank tops etc. I honestly don't think that people have ANY idea what this is like as a young woman who is hindered by her appearance. I used to play baseball but had to quit that because if it rained during a game, I would absolutely panic thinking that my make up is going to come off and people are going to see my ugly face underneath
h)Some days (not all days!) I feel soooooo sore, to the point that I can hardly type on the keyboard
i) some day (not all) my muscles are so sore that my cat can't even sit on my lap
j) some days I am so sore that my husband can't even give me a massage because although I am sore in my neck and shoulders and think I need a massage, it is far to painful to let him do it. It feels like I am bruised all over and he's massaging my bruises :
k) I have had to go on anti depressants last year because I have such a horrible view on life and myself now
l) I have lost my job because of this disease, and I have always been a really hard worker, who enjoyed working. I've held a steady job since I was 14 and have NEVER been fired-until now.
m)I don't go camping anymore, because of the sun exposure, and my inability to be able to go swimming, so I miss out on that. I don't go to the beach anymore either.
n) sometimes (and other people have told me what others say) people think that I simply don't want to work, instead of the truth that I can not work when I am sick. Others have told me what people have said, 'she looks fine" well if they only knew what it feels like on the inside.
o)if I do anything physical (say for example rake the leaves) I am SORE for at least 3 days afterwards. unfortunately this includes having sex, I am really sore over my entire body after doing anything physical.
p)I am soooo tired all of the time. I can go to bed at 11 with my husband, and not get up until 11am the next day. I need at least 4-5 more hours of sleep than a 'normal person'---hence why it's so hard to hold a job, as I was always calling in sick.
q)the pills I've been prescribed are called plaquenil, for the lupus. they haven't improved anything. how do you think it feels to take medicine religiously for 11 years, and yet my disease keeps getting worse? It started out as one lesion on my right cheek, and now it's spread to over 40 on my face alone.
r) I am really really scared to have a baby, because I know it is only going to get worse
s) for my wedding which was just over a month ago, I was having panic attacks just thinking about our first kiss....what if he kisses me too hard, and rubs all my make up off my nose, than I am going to be exposed in front of everyone. I was JUST dreading it. That's not how your freakin wedding day should be. But it just goes to show how damaging this disease is.
t) I've had people say to me...'did you get bit by a spider or something?"or "Did someone put a cigarette out on your face'.I will never ever ever forget those comments. They've literally scarred me for life.
u) medical benefits do not cover camoflauging make up. How ridiculous. It's not that I want them to buy me my liipstick and mascara, however, I feel like a burn victim, my face is now deformed and physically changed.
v) medical benefits don't supply sunblock, which is mandatory for my condition.
Anyway, I was trying to let you know how I feel and how my experience is with lupus everyday.
Sincerely, Tara .
Lisa's Story
Twelve years ago, I woke up one morning and could not move! I thought that I was in a really bad dream. After coming to the realization that it was not a dream, I started to panic. I tried so hard to get help and started to cry because of the pain and the fear of not being able to move. My husband helped me up slowly as I could not get up on my own. I could not shower, dress myself or walk. Eating had become excruciatingly painful because my jaws were in severe pain and I could not open and close my hands to even hold the food. Arthritis had ravaged through my entire body which caused my joints to stiffen.
This was the beginning of my long journey to recovery. Since being diagnosed with lupus, I have also suffered from short term memory loss due to my central nervous system becoming ‘flared’. Having my short term memory affected was very frustrating. Conversations became extremely difficult because I would forget words and lose my train of thought. I can hear them talk and see their lips move but I could not clearly hear nor comprehend what they were saying to me. All I was left with was pointing to objects or drawing pictures to get my thought across to people. Reading had become a challenge as well. I would read the same sentence over and over again until I can understand what I was reading. Summer are the most difficult months for me. I cannot be outdoors to enjoy the warmth of the sun. The sun’s UV and the heat cause severe headaches, heart palpitation, dizziness and overall swelling. I used to play golf but now I can’t. I stay mostly indoors during this season to keep cool.
With my lupus, I also suffer from fibromyalgia, raynauds phenomenon, migranes, sun sensitivity and high blood pressure. Through a ‘cocktail’ of medication such as methotrexate (oral chemo), immune suppresent drugs (imuran), steroid (predisone), and other medications, I have been able to control my lupus.
Having lupus has taught me not to take anything for granted. Instead of feeling self pity and say ‘why me?’ instead, I say… ‘Why, not me?’ I firmly believe that we all have a purpose in life and I think that my purpose is to raise funds and awareness for lupus research.
My story can be found at www.lupusspringfling.com.
Good luck.
Lisa Cherry
This was the beginning of my long journey to recovery. Since being diagnosed with lupus, I have also suffered from short term memory loss due to my central nervous system becoming ‘flared’. Having my short term memory affected was very frustrating. Conversations became extremely difficult because I would forget words and lose my train of thought. I can hear them talk and see their lips move but I could not clearly hear nor comprehend what they were saying to me. All I was left with was pointing to objects or drawing pictures to get my thought across to people. Reading had become a challenge as well. I would read the same sentence over and over again until I can understand what I was reading. Summer are the most difficult months for me. I cannot be outdoors to enjoy the warmth of the sun. The sun’s UV and the heat cause severe headaches, heart palpitation, dizziness and overall swelling. I used to play golf but now I can’t. I stay mostly indoors during this season to keep cool.
With my lupus, I also suffer from fibromyalgia, raynauds phenomenon, migranes, sun sensitivity and high blood pressure. Through a ‘cocktail’ of medication such as methotrexate (oral chemo), immune suppresent drugs (imuran), steroid (predisone), and other medications, I have been able to control my lupus.
Having lupus has taught me not to take anything for granted. Instead of feeling self pity and say ‘why me?’ instead, I say… ‘Why, not me?’ I firmly believe that we all have a purpose in life and I think that my purpose is to raise funds and awareness for lupus research.
My story can be found at www.lupusspringfling.com.
Good luck.
Lisa Cherry
Tavin's Story
I've been "off" for quite a few years. I'd been tested every year for over 20 yrs for lupus and other autoimmune disorders. Five years ago I was diagnosed with Hashimoto's. About a year ago things got really bad and I was diagnosed with RA and most likely lupus. I still don't have a definite diagnosis but they are treating me for it and still investigating. When I go to see my GP or my rheumie they say things like " with seranegative lupus and RA these are common symptoms" and " we are still investigating but with lupus you can expect...". I am on plaquinil, prednisone, dessicated pork thyroid, and pain killers (not namby pamby ones either, percocet and morphine when needed) if I am in terrible pain.
I am a wife, mother, and care giver. I currently work as a special education assistant in an elementary school. I'd work as a teacher (which is what I am trained to do) but I don't have the energy or strength to do it. That being said, my work with nonverbal, mobility challenged, usually autistic children is not a walk in the park. Mind you, a walk in the park is often more than I can handle. When I am finished my work day I am often so exhausted that I fall asleep talking to my children.
I LOVE my work and want to continue doing it. I am terribly afraid that when or if I get ill enough that our family will lose a second income. We are barely living a middle class lifestyle as it is and we've worked hard for it. I am afraid that I will not be able to claim disability.
Tavin Robinson
New Westminster, British Columbia
I am a wife, mother, and care giver. I currently work as a special education assistant in an elementary school. I'd work as a teacher (which is what I am trained to do) but I don't have the energy or strength to do it. That being said, my work with nonverbal, mobility challenged, usually autistic children is not a walk in the park. Mind you, a walk in the park is often more than I can handle. When I am finished my work day I am often so exhausted that I fall asleep talking to my children.
I LOVE my work and want to continue doing it. I am terribly afraid that when or if I get ill enough that our family will lose a second income. We are barely living a middle class lifestyle as it is and we've worked hard for it. I am afraid that I will not be able to claim disability.
Tavin Robinson
New Westminster, British Columbia
Jennifer's story
It all started when i was just a child in 1989.I had been the picture of health not a thing wrong with me except the usual childhood ailments like chickenpox and a broken leg from a field trip i was once on.
But when the lupus started being involved was in 1987 on my mother's second wedding honeymoon(she HAD to take me because she had no one to watch me). Anyways,we had rented a mobile camper van and driven down the west coast of the United States and went to Disneyland.
Everything seemed fine until one unusally warm day when it seemed like i had heat stroke and so my mom told my stepdad that she was taking me back to the van to "cool down".
I don't remember much between that time and time i got diagnosed. I know in 1988 my mom and my stepdad had moved into our first house and i was in grade 6.Just starting out at a new school.And every once in a while i would get the typical symptoms of Lupus(but i didn't know it at the time). And after school i would get so tired that i had to "crash" at the end of my parents bed on the floor. I would spend what felt like hours there on the floor and the sun always seemed too hot and unbearable.
One night during that period of me "crashing" at the end of my parents bed (and that one night i was sound asleep in my bed) my mom woke up and said something like she knew that my kidneys were failing. She then made a appointment to my pediatrician and she told him what had been going on and he said that it sounded like a illness he knew quite a bit about(Lupus) and were sending me to a specialist at B.C. Children's Hospital . We went to the emergency room where the specialist was waiting for me and after a bunch of tests, on Mother's Day,1989 i officially got diagnosed with Systemic Lupus Erythematosus(SLE). And after the doctor diagnosed me with that he informed my parents that it was a incurable disease and that the kind of lupus i had could attack any vital organ in my body.AT that time they discovered that it "attacked" my kidneys.And he also said that i would most likely have 3 "flare-ups" and after the 3rd my kidneys would shut down and i would be put on kidney dialysis.
Between 1989 and 1993(when my life would chage forever) i was admitted on and off,given steroids and then in the Spring of 1993 i had the 3rd flare-up.I went from a fairly normal 150-155lb. 15 year old and in a matter of 3 months my kidneys failed and then on July 10,1993 my kidneys i started kidney dialysis.
This is where i have remained for most of the time since.Except for a 7 month Kidney transplant i had in 1997 at the age of 19.And in November of 1997 i went back on dialysis where i have remained ever since.And because of the drugs that i was put on for the Lupus it damaged both of my hips and both of my shoulders and for about 10 years i had to spend time in a wheelchair. But even though what i JUST told you might seem awful there has been good things that have happened.The First, one i am MOST happy about is that i have been able to keep my SLE in TOTAL remission since 1993!! And as for the Thing about my joints being a problem,Since moving to Nova Scotia in 2004 i have had them replaced :)
The prognosis for the Lupus is STILL good :) STILL in total remission and for now that is the way i want to keep it.
I hope this will help you some.
Sincerely,Jennifer White
But when the lupus started being involved was in 1987 on my mother's second wedding honeymoon(she HAD to take me because she had no one to watch me). Anyways,we had rented a mobile camper van and driven down the west coast of the United States and went to Disneyland.
Everything seemed fine until one unusally warm day when it seemed like i had heat stroke and so my mom told my stepdad that she was taking me back to the van to "cool down".
I don't remember much between that time and time i got diagnosed. I know in 1988 my mom and my stepdad had moved into our first house and i was in grade 6.Just starting out at a new school.And every once in a while i would get the typical symptoms of Lupus(but i didn't know it at the time). And after school i would get so tired that i had to "crash" at the end of my parents bed on the floor. I would spend what felt like hours there on the floor and the sun always seemed too hot and unbearable.
One night during that period of me "crashing" at the end of my parents bed (and that one night i was sound asleep in my bed) my mom woke up and said something like she knew that my kidneys were failing. She then made a appointment to my pediatrician and she told him what had been going on and he said that it sounded like a illness he knew quite a bit about(Lupus) and were sending me to a specialist at B.C. Children's Hospital . We went to the emergency room where the specialist was waiting for me and after a bunch of tests, on Mother's Day,1989 i officially got diagnosed with Systemic Lupus Erythematosus(SLE). And after the doctor diagnosed me with that he informed my parents that it was a incurable disease and that the kind of lupus i had could attack any vital organ in my body.AT that time they discovered that it "attacked" my kidneys.And he also said that i would most likely have 3 "flare-ups" and after the 3rd my kidneys would shut down and i would be put on kidney dialysis.
Between 1989 and 1993(when my life would chage forever) i was admitted on and off,given steroids and then in the Spring of 1993 i had the 3rd flare-up.I went from a fairly normal 150-155lb. 15 year old and in a matter of 3 months my kidneys failed and then on July 10,1993 my kidneys i started kidney dialysis.
This is where i have remained for most of the time since.Except for a 7 month Kidney transplant i had in 1997 at the age of 19.And in November of 1997 i went back on dialysis where i have remained ever since.And because of the drugs that i was put on for the Lupus it damaged both of my hips and both of my shoulders and for about 10 years i had to spend time in a wheelchair. But even though what i JUST told you might seem awful there has been good things that have happened.The First, one i am MOST happy about is that i have been able to keep my SLE in TOTAL remission since 1993!! And as for the Thing about my joints being a problem,Since moving to Nova Scotia in 2004 i have had them replaced :)
The prognosis for the Lupus is STILL good :) STILL in total remission and for now that is the way i want to keep it.
I hope this will help you some.
Sincerely,Jennifer White
Angie's Story
My name is Angie Sica , And I have LUPUS...
When I was just starting my life, new wife, new mother and a wonderful job. I thought I had the perfect life, Until the summer of 1991 when I started to feel fatigue, and sick all the time.I kept going to the doctors and nothing was found. I was told it was due to the busy life style I was having. Then I started to get lesions on my whole body and not knowing what it was was sent to a specialist... ( Thank God my doctor was consistent) I was then given so many test and a biopsy of one of the lesions on my arm, and that when I was diagnosed with Lupus.
Since then have lived with fatigue, aches and pains and have had to stay home on and off from work.
Then I got pregnant the second time and miscarried.... After 6mths of the miscarriage I was given the ok to try and conceive again... I was THz pregnant when I started to loose 15 grams of protein and went was loosing the battle... sent to yet another specialist and another biopsy, I was then diagnosed with LUPUS in my kidneys and had no choice but to abort the baby, I was devastated.( I was determined to have another child)After seeing the doctor a few times, on our last visit ( I was pregnant but not confirmed) he suggested to not get pregnant anymore. After a few weeks I went to get my pregnancy test and I was in fact pregnant again. I went to see my specialist and we decided to go ahead with the pregnancy and to be monitored every two weeks at the hospital. All the time being pregnant I felt fatigue x 2 and very weak. at seven and a half months I became dizzy while taking a shower and fell breaking my ribs. Rushed to the hospital in fear of loosing my baby , besides the broken ribs, my baby was fine. I was asked to be bed ridden for the remainder period of my pregnancy. I delivered a healthy baby boy 3 wks early due to my kidney function. I felt relieved it was over. having LUPUS its a longer recovery and healing takes much longer. Since then I have had good days and bad days.The bad days have costed my job due to too many days sick, and more doctor visits... I was given notices and eventually the stress of all of that left me home sick and jobless. I was then on sick benefit and once it ran out I had no income. I began to experience anxiety as my LUPUS got worse. All my joints, my back... my hands , feet and legs , I felt helpless. I was going to the doctor on a weekly basis, trying the chiropractor but nothing helped. I not only have constant pain in my back , hands and feet, I have had my skin peeling to a raw feeling...( not being able to clean cook, take showers and walk well) I was finally put on meds again and now experience stomach pain...
With LUPUS , there is no win win situation... I am now home, separated with 2 kids and no income. My doctor has recommended due to my Lupus to apply for disability. I have applied on Sept 19th and have been waiting since. You have people that are on disability for non life threatening disorders but people with LUPUS that die everyday have a hard time getting acknowledged.Where is the justice for that...
WE LUPUS suffers live day to day , hoping to have one good day... to play with our kids , go to a party without pain, and doing everyday house work, fear that we will die from this one day.
This is not just a decease that comes and goes, its stays for life and affects not only me but my family too.
Please help us make a difference that we too have a disability that holds us back on daily duties! Why can't the disability people see this .
Angie Paniccia Sica
When I was just starting my life, new wife, new mother and a wonderful job. I thought I had the perfect life, Until the summer of 1991 when I started to feel fatigue, and sick all the time.I kept going to the doctors and nothing was found. I was told it was due to the busy life style I was having. Then I started to get lesions on my whole body and not knowing what it was was sent to a specialist... ( Thank God my doctor was consistent) I was then given so many test and a biopsy of one of the lesions on my arm, and that when I was diagnosed with Lupus.
Since then have lived with fatigue, aches and pains and have had to stay home on and off from work.
Then I got pregnant the second time and miscarried.... After 6mths of the miscarriage I was given the ok to try and conceive again... I was THz pregnant when I started to loose 15 grams of protein and went was loosing the battle... sent to yet another specialist and another biopsy, I was then diagnosed with LUPUS in my kidneys and had no choice but to abort the baby, I was devastated.( I was determined to have another child)After seeing the doctor a few times, on our last visit ( I was pregnant but not confirmed) he suggested to not get pregnant anymore. After a few weeks I went to get my pregnancy test and I was in fact pregnant again. I went to see my specialist and we decided to go ahead with the pregnancy and to be monitored every two weeks at the hospital. All the time being pregnant I felt fatigue x 2 and very weak. at seven and a half months I became dizzy while taking a shower and fell breaking my ribs. Rushed to the hospital in fear of loosing my baby , besides the broken ribs, my baby was fine. I was asked to be bed ridden for the remainder period of my pregnancy. I delivered a healthy baby boy 3 wks early due to my kidney function. I felt relieved it was over. having LUPUS its a longer recovery and healing takes much longer. Since then I have had good days and bad days.The bad days have costed my job due to too many days sick, and more doctor visits... I was given notices and eventually the stress of all of that left me home sick and jobless. I was then on sick benefit and once it ran out I had no income. I began to experience anxiety as my LUPUS got worse. All my joints, my back... my hands , feet and legs , I felt helpless. I was going to the doctor on a weekly basis, trying the chiropractor but nothing helped. I not only have constant pain in my back , hands and feet, I have had my skin peeling to a raw feeling...( not being able to clean cook, take showers and walk well) I was finally put on meds again and now experience stomach pain...
With LUPUS , there is no win win situation... I am now home, separated with 2 kids and no income. My doctor has recommended due to my Lupus to apply for disability. I have applied on Sept 19th and have been waiting since. You have people that are on disability for non life threatening disorders but people with LUPUS that die everyday have a hard time getting acknowledged.Where is the justice for that...
WE LUPUS suffers live day to day , hoping to have one good day... to play with our kids , go to a party without pain, and doing everyday house work, fear that we will die from this one day.
This is not just a decease that comes and goes, its stays for life and affects not only me but my family too.
Please help us make a difference that we too have a disability that holds us back on daily duties! Why can't the disability people see this .
Angie Paniccia Sica
Our Stories
Many of us have stories that are touching and heart wrenching. We live with this disease and learn to thrive with it. The next series of posts will be our stories. Please read and enjoy.
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