Lupus is a chronic, unpredictable and potentially fatal autoimmune disease in which the immune system is out of balance, causing inflammation and tissue damage to any organ system in the body, including the joints, kidneys, heart, lungs, brain, blood, blood vessels and skin. The health effects of lupus may include heart attacks, strokes, seizures, miscarriages, and organ failure.
Because Lupus mimics so many other diseases it can be difficult to diagnose. There are 1.5 million people in America and 5 million people worldwide that have a form of Lupus. Lupus affects all 5 million of us differently as Lupus can range from mild to life threatening.
I was diagnosed with Lupus in 1995. It doesn't just affect my life but the lives of my family as well. This is the story of how my family and I live with Lupus.
The last couple of weeks have been very hard both physically and emotionally and not just for me but also for several of my friends. I've only slept about 3 hours per night for the last few nights. It makes for very long exhausting days. Times like these are when I like to think back at all the things I am thankful for and grateful for.
My favorite radio station- 94.5 KFMX. They keep laughing all morning and rocking all day.
The ability to laugh at myself when I drive my employee to the Walgreen's parking lot instead of to the restaurant on the next block for lunch.
The wonderful gifts my daughter picks out for me
The way my husband knows I need him without me having to say a word
Working - it means I'm useful and it keeps my mind busy
Kindle Fire and my love of reading
Exercise (didn't see that one coming)
The ability to apologize when I am wrong
Freedom of speech
2012 Olympics
Loving myself because it allows me to love others
Accepting myself , the good, bad, and ugly parts of me
My list of gratefuls keeps me grounded and helps me not become a whiny person. Whether you are having a bad day or not; everyone needs a list of gratefuls. It can do wonders for you day when you think of all the wonderful things that you're happy and/or grateful for.
The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before.
It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:
follow the instructions of their physician,
take their medication(s) as prescribed, and
know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.
Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.
New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.*
Once upon a time I came very close to giving up on life and giving in to Lupus.It seemed that everything that could go wrong with my body did. I never tried to show it on the outside but on the inside I was scared to death. Everything that could go wrong with my body did all at the same time. I wrote down things that I couldn't say out loud to my family without breaking down. I needed them to know how much I loved them and wanted them to live full and happy lives if I didn't make it.
For my daughter, I wrote down things that every girl should know.Things like how to put on make up, how to know if you have to much perfume on, to never leave the house looking like you just rolled out of bed, and how to know if you were in love. I needed her to know these things in case I wasn't around to go thru them with her. No matter how good a father my husband is he isn't a mom. I also gave my husband my blessing to marry again. I tried to get him to promise me he would because I wanted him to be happy and not alone. All the things I could never say out loud I told him in my letters.
These aren't things a 28 year old should ever have to contemplate about much less deal with. However because of the severity of my Lupus I had to face my mortality very early on. It was also during this time that I learned to enjoy each and every day no matter what it brings. Finally I learned that you should never ever wait to tell someone how you feel about them. This is when I decided that no matter how bad I was feeling on any given day I can and will find something to be thankful for. I love life and I have a lot to live for.
Now the I live in the present and look forward to the future, I can't wait for my 21 year old daughter to get married and give us grand babies to spoil. I am excited about growing old with my husband and enjoying the our lives together. I look forward to simple things, like playing with our dog(s), drinking coffee, listening to my favorite radio station, spending quiet nights with my husband, teasing my daughter, going to work, and reading a good book.
I still have Lupus and I'll have it for the rest of my life. But I also have hope, joy, love, and peace in my life and these are the things that matter the most to me. Once upon a time I came very close to giving up but I didn't. I deserved more than that and so did my family.
Being diagnosed with Lupuswas a pretty traumatic time for me as well as for many others. You do realize that your life will change however you have NO idea how much. Your energy levels, moods, medications, lifestyle, and many other things change with the ebb and flow of Lupus. Depression can happen with all the changes that we go thru.
My life did changed tremendously after being diagnosed with Lupus. There were many changes I recognized and understood and so many more changes that slipped under the radar for many years. For starters I had terrible mood swings and horrible anger issues. I didn't know where they came from or why I was having them just that they made my family and co workers miserable. I learned years later that the mood swings and anger were a part of depression. The depression was brought by the fact that I had not dealt some of the changes in the life I had planned before being diagnosed with Lupus.
I accepted the disease but not the changes it made in my life. I didn't want to deal with it not being safe for me to have more children, not being able to play in the sun, not being spontantenous. When I was diagnosed with the big bad D word (depression) I didn't understand how I could be depressed. I am a very positive person and I don't let anything get me down for too long. That didn't equal the picture of depression I had in my head. In the past when I thought that being depressed meant you acted like a morose bored teenager; I had never been so wrong.
Changes in appetite leading to weight loss or weight gain
Feelings of uneasiness, anxiety, or irritability
Feelings of guilt or regret
Lowered self-esteem or feelings of worthlessness
Inability to concentrate or difficulty thinking
Diminished memory and recall
Indecisiveness
Lack of interest in things formerly enjoyed
Lack of energy
General slowing and clouding of mental functions
Diminished sexual interest and/or performance
Recurrent thoughts of death or suicide
Facts About Clinical Depression and Lupus *
Between 15 and 60 percent of people with a chronic illness will experience clinical depression.
Clinical depression may be a result of the ways in which lupus physically affects your body.
Some of the medicines to treat lupus—especially corticosteroids such as prednisone (and at higher doses of 20 mg or more)—play a role in causing clinical depression.
Clinical depression may be a result of the continuous series of emotional and psychological stressors associated with living with a chronic illness.
Clinical depression may be a result of neurologic problems or experiences unrelated to lupus.
Clinical depression also produces anxiety, which may aggravate physical symptoms (headache, stomach pain, etc.).
Two common feelings associated with clinical depression are hopelessness and helplessness. People who feel hopeless believe that their distressing symptoms may never improve. People who feel helpless believe they are beyond help—that no one cares enough to help them or could succeed in helping, even if they tried.
My PCP prescribed an anti-depressant for me and that helped but it didn't "cure" me. The hard part for me was to begin dealing with some of the issues I refused to think about or talk about. Once I was honest with myself it made things a bit easier to deal with. Talking about my issues and getting them out in the open helps me more than medication does. It is one the reasons I choose to write. Writing is a positive way for me to get my feelings out; like a cleanse only a lot less messy.
Depression will always be something I'll have to deal with. I've learned some tools to help me deal with it more effectively and in a positive manner. No more screaming fits for me. There are many different ways to help cope us with depression. The coping mechanisms I use may not work for everyone but there so many more ways to cope with Lupus and depression.
I have been tobacco free for 12 years. I smoked off and on from the time I was 12 years old up to when I was 30 years old. When I first started smoking (mostly choking ) in 6th grade I thought I was tough. At that age having a cigarette was a way for me to exert some control over my life as well as show the world how "tough" I was. In my late teens cigarettes were largely an accessory for the weekend and of course I thought I looked mature and cool. In my twenties cigarettes were a stress reliever. I loved having a cigarette with a cup of coffee or a glass of wine and definetely after a stressful day. My pack was the first thing reached for when I got off work. Working in healthcare all of my adult life I knew smoking wasn't good for me but I wasn't interested in quitting.
When I was diagnosed with Lupus of course I was told that I needed to quit smoking. My rheumatologist went over the risks with me but I wasn't listening to him. I felt that I was not in control of my life again. I reverted back to being a 12 year old girl and continued smoking to show that I was the "boss of me"! Smoking only made a bad situation worse. Over a few years time I developed Raynaud's and an arterial clot. When I had the fem-pop bypass my surgeon explained that smoking could and would continue to constrict my blood vessels. It would mean slow healing and possibly the development of another clot.
Two years later I developed Class 4 nephritis. I continued to smoke until my rheumatologist said to me" You have enough things killing you; why are you WILLING adding one more?" I'd never thought of smoking in those terms and it was a real eye opener. I prided myself on being strong and fighting for my life but in actuality my stubborn stupidity was killing me!
Finally that was enough for me to put the cigarettes down. I quit cold turkey. I am not gonna lie, even after 12 years sometimes I still want a cigarette when I get super stressed or upset. But I have resisted the urge to pick up cigarettes again because my health is more important than temporary stress relief. I've also learned that by not smoking I am now really controlling my life.
The following list pairs what we know about lupus with the known effects of smoking:
People with lupus are more susceptible to infections, with respiratory infections among the most common.
Smoking cigarettes increases the risk of pneumococcal pneumonia and chronic bronchitis. Researchers report that passive smoking, or regular exposure to secondhand smoke, also raises the risk of having this type of pneumonia. Smoking or hanging around others who do may increase your risk of pneumococcal pneumonia.
People with lupus on long-term moderate (11-40mg/day) to high (41-100mg/day) doses of prednisone have been found to develop heart disease (atherosclerosis) 20 to 30 years earlier than the general population. It's not uncommon for angina (heart muscle pain) and even heart attacks to occur in lupus patients as young as 30 or 40 years of age.
Smoking increases the risk of coronary artery disease. If you smoke and have lupus you greatly increase the risk of damaging your heart.
Lupus can affect the blood vessels and circulation in a variety of ways. Raynaud's disease is common in people with lupus and when active, results in poor circulation to the hands and feet. Lupus vasculitis can cause narrowing of blood vessels and reduced blood flow to tissues and organs. Antiphospholipid antibodies may increase the risk of serious blood clots and stroke.
Smoking contributes to blood vessel spasms and can magnify the effect of Raynaud's making a mild case worse, and could result in severe damage to fingers and toes.
Smoking increases the risk of stroke.
Kidney disease in lupus can result in hypertension.
A study at Stanford University of patients with lupus nephritis found that those who smoked progressed to end stage kidney disease far more quickly than did non-smokers (145 months vs. 273 months).
Smoking contributes to elevated blood pressure which increases the risk of stroke and worsening kidney disease.
People with lupus can also develop diabetes and thereby be prone to poor wound healing.
Smoking slows wound healing.
Smoking increases the risk of heart attack in diabetics (insulin or non-insulin dependent).
Heartburn is found in 10 to fifty percent of people with lupus.
Smoking has harmful effects on all parts of the digestive system, contributing to such common disorders as heartburn. National Institute of Diabetes and Digestive and Kidney Disease - Smoking and Your Digestive System.
Many of the medications used to alleviate symptoms of lupus are broken down by the liver. Lupus can affect the liver.
Smoking affects the liver, too, by changing the way it metabolizes drugs and alcohol. In some cases, this may influence the dose of medication necessary to treat an illness.
Lupus can cause skin disease, which may be effectively treated with antimalarial medications.
Smoking has been shown to interfere with the benefits of hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) for the skin disease of patients with SLE.
A study at the University of Minnesota of patients with discoid lupus erythematosus (DLE) found that smoking was more prevalent in people with DLE compared to those with other skin diseases and those in the general population. The researchers proposed that smoking may be a risk factor for development of DLE.
Lupus can cause hair loss and other skin symptoms.
Smoking has been associated with skin diseases and studies in mice indicate a link may exist between smoking and both hair loss and premature gray hair.
Medications used in the treatment of lupus: prednisone, excessive thyroid hormones, anticonvulsants, antacids containing aluminum, and heparin increase the risk for fragile bones or osteoporosis.
Smoking magnifies the risk for osteoporosis.
In addition, over the years research has consistently shown that cigarette smoking causes skin wrinkling that could make smokers appear prematurely old.*
Sometimes no matter how much rest I get, it still isn't enough. Fatigue, especially when you've rested is hard to accept and very hard to explain to someone who does not have a chronic illness.
Imagine having to pace yourself... just to get out of bed, planning for a half hour or more on how to get to the restroom and back, having to rest because you took a shower, falling asleep after having coffee.
The extreme fatigue is one of the worst things about having Lupus for me. If I am tired I want it to be for a reason. I want to have accomplished something; not just be having a bad Lupus day. I always describe the fatigue as like walking thru the deep end of the swimming pool fully dressed with a parka on.
Depression, anxiety, lack of exercise,and smoking are believed to be related to Lupus fatigue. There are times when the fatigue hits me and I feel weighted down by life itself. In order to break the cycle of depression and/or anxiety that comes with fatigue I depend very heavily on my support system. My husband, daughter, my pup(s), and my friends including our wonderful support group help me get thru the rough times.
I try to push myself a little bit more everyday, when I'm feeling this way. every little bit helps to get me out of the rut. Medication and exercise help but having a support system makes ALL the difference in the world. If you don't have one, I strongly suggest you find one. Support without judgement is a wonderful thing.
As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.
In addition, poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise have all been found to be related to lupus fatigue. Before the physician can conclude that fatigue is related to these factors, any "treatable" causes of fatigue (for example, anemia, kidney failure, or hypothyroidism) need to be ruled out.
Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group have been found to help. By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.
Tips to Help You Manage Fatigue
Alternate activities with periods of rest throughout the day.
Establish good sleep patterns.
Plan ahead; for example, shop for gifts throughout the year.
There is nothing more irritating and/or frustrating for someone with a chronic illness to hear than "You don't look sick". The comment is so prevalent for those of us with Lupus and other autoimmune diseases that a website with the name www.butyoudontlooksick.com was created by a person with Lupus. The website is used to educate people about Lupus. I think they've taken something negative and made it a positive. For many of us with chronic illnesses "you don't look sick" isn't always taken as a compliment most especially when it's said with a "prove your sick" attitude. After all we don't look sick enough to be disabled, to have a handicapped sticker, to not be able to work, to not get out of bed, and the list goes on and on. Well you can't tell if a person is sick by looking at them anymore than you can tell if a person is nice, kind, loving, honest, mean, dishonest, or evil.
That old saying about not judging a book by its cover really holds true for people with Lupus. For example the picture of my husband and I was taken in the midst of the worst flare I'd ever had. I could barely walk and I couldn't wear shoes. I had to wear little cloth slippers because of an unhealed ulcer on my baby toe. A few days after this picture was taken I was in a wheelchair. A day or so after that I was in CICU awaiting a femoral-popliteal bypass on my right leg. My doctor found a clot in my femoral-popliteal artery. The ulcer on my toe wouldn't heal because I had very little or no circulation in that leg. As you can see looks can be deceiving.
When you don't feel good you don't usually care what you look like - you just want to feel better. The next time you meet someone with Lupus or another chronic illness keep in mind that no matter how the great the person looks on the outside the inside of them could be train wreck. Keep that in mind before you judge them as not sick enough based on the way they look.
We've all played the "open mouth insert foot" game a time or two in our lives. When people give advice to anyone with a chronic illness; they seem to take the game to a whole new level. Some of the things that those of us Lupus have heard are:
Ignore the pain or don't think about it will go away
Sinning causes sickness
Get out and get more sun
Stop taking all those pills
Eat better
Join the army -they have free healthcare
Exercise more
Drink this shake, juice, or these vitamins they will cure you
Those diet drinks are making you sicker
Stay away from me - your Lupus is making me sick
I don't understand why you're so tired- you don't do anything
You'd feel better if you'd get a job
I know someone with Lupus who has a job
I looked up Lupus the internet and it won't kill you
The list goes on and on and on of things that we hear from our friends, loved ones, neighbors, and co workers. We make the assumption that our families are trying to support us and make us feel better; but these comments and snide remarks don't help.
These "invisible" illnesses can make you doubt yourself. They can drain away your self esteem, and your self worth. Being in a body that you have no control over isn't an easy thing. Having an illness that not many people including medical personnel don't really understand is terrifying.
Think before you offer advice on a disease that you know little to nothing about. We need support not your judgements or cures. If you really want to know what Lupus is about ask the person that lives with it everyday.
Let's face it, I hate working out. I have made up excuses for the last 6 months about working out: I'll wait until I feel better; I'm incoherent in the morning; I'm too tired in the evening; I'll start next month; Monday's suck; I'll start on even numbered day; and my all time favorite excuse is : I don't like to sweat!
It took me a while but I finally got tired of lying to myself. I was getting pretty mad at myself and the limitations I placed on me. I wouldn't accept anyone else trying to limit me; however I was perfectly willing to limit myself. I think what upset me the most is I was essentially sabotaging myself. Today was slow going but I stuck with it. It is going to take a while to build up strength, speed, and stamina but I have no doubt that I can do it. I have a friend who has Lupus as well and she bench presses 135 lbs! She can dead lift 150! This woman loves to run, she swims laps, and is learning to be a trapeze artist! I don't have that kind of goal in mind, I just want to be in shape and lose weight.
Being on steroids for the last 16 years has not helped, in fact it is a large part of why I've put on so much weight. Steriods are a triple danger for me- it has weakened my spine , bones and has also given me steroid-induced diabetes at one time 10 years ago. The fact is it's going to be hard to get the weight off and even harder if my steroid dosage ever has to be increased. That will put me in danger of losing any progress I will have made. But I am not going to live in the world of what ifs.
I have always been comfortable with myself no matter what size I am or how much I weigh. But it isn't about me being comfortable or okay with myself anymore. Now it's about me getting as healthy as I can. I don't want my weight to be another danger to my life. Lupus is enough of a danger to me as it is. In the past I've lost weight by dieting, but I've not been able to keep it off because I didn't want to include exercise. This time I am going to do it right- both work out and eat right. Time for a total lifestyle change.
I think my family is afraid....and they should be.
Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.
Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. Steroids can suppress growth in children. Steroids can also cause irritability, agitation, excitability, insomnia, or depression. These changes in appearance and mood are more apparent with high doses of steroids.*
I can be stubborn, a little bitchy, short-tempered, hard-headed, and set in my ways. I am open-minded but can still be judgmental. In other words; I'm not perfect. Even after 42 years I'm still a work in progress. I've learned that the only way I can even attempt to improve myself is to accept my faults. In this quest for self improvement I am also a work in progress.
One of the reasons I am working on self-improvement is that I didn't like myself very much 3 or so years ago and I'm betting not many other people liked me either. I had a terrible anger problem; I lashed out at my family, friends, and co-workers. My job was on the line after one particularly horrible confrontation and I had to go thru anger management.
During the anger management class/course, I learned that prednisone(corticosteroids) along with anxiety mixed liberally with my personality made for a dangerous mix. I'm also a fixer, if there is a problem I am almost compelled to come up with a solution or fix. However I took it personal when my solution and/or advice wasn't followed and I wasn't shy about telling you about it. A couple of other things I realized early on were that I couldn't stop prednisone and I had to deal with my anxiety instead of ignoring it and hoping it would go away. I went to my PCP and got on anti anxiety medication, however medication alone wont solve the problem.
There were behaviors I needed to change:
First and foremost MIND MY OWN BUSINESS: I felt I had to defend everyone who couldn't or wouldn't defend themselves
Pick my battles; arguing every point is useless I had to learn to fight for things that made a difference and not fight for the sake of fighting
Think before speaking; obviously this is the hardest thing for me to do still do this day.
Try to get to the root of the anxiety; not being in control is a major factor in my anxiety. While growing up I had no control and apparently I was making up for it. Finally I learned that I can't control everything and most of the time I'm okay with that.
After I accepted that I couldn't put all the blame on Lupus or steroids, I began to feel better about myself. Since I no longer have the weight of the world on my shoulder I do feel better. I still come up with solutions to fix things but I don't always share them. If I'm asked for a fix; I no longer take it personal when my advice isn't used. However, I do reserve the right to say "I told you so"- see I told you I wasn't perfect.
Computers, internet, and social websites have been a blessing to so many of us. It allows us to interact with people we've never met, but we have things in common with and to reconnect with people, friends and family we grew up with and haven't seen for years. I've met many people and made many great new friends thru social networking. We share music interests, books, tattoos and shoes. Many of us have Lupus in common. It has been an eye opening as well as a mind opening experience, to "meet" so many people that have the same illness as myself. With support systems we should have empathy, understanding, and be supportive to one another.
At times the online experience isn't as positive we wish it to be. In opening up our lives to the positive, there is also negative experiences. Toxic people exist in real life was well as virtually. They are the negative, manipulative, narcissitic, judgemental, insincere, downers, disrespectful, and nothing ever makes them happy people. I find it quite shocking at some of the things people will say because they are online and not in person. It seems to loosen up the tongue (or fingers), because quite honestly there are no repercussions. They can be very disrespectful and down right nasty. I do my best to stay away from those people because I dont want to be sucked in. Life is too short and frankly I don't have to put up with it. If you get caught up in a situation like that I find it best to remove the people that are causing it.
Being toxic is a choice and I choose not too. Enjoy life- that's what it's all about.
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