Lupus and Suicide-Trigger Warning

skeletontreeI am Suicidal.

It comes with the territory of having lupus and depression. I am not ashamed of admitting that there is rarely a day that goes by when I don’t think about suicide. I am not ashamed to admit that I have attempted suicide several times in the last 19 years. When it comes to talking about my life with lupus, I struggle with the words that I want to say because I’m so used to having to hide it and having to sugar coat it and be the kind of sick that somehow highlights the strength and determination of the human spirit and whatever other nonsense that makes people more comfortable with my illness and my inevitable death.

When I say inevitable death, let’s be honest. We’re all going to die someday and no one knows how or when, unless you happen to have lupus or any other disease that is incurable or has a high mortality rate. Then, you have a pretty good idea of what’s in store for you. For the last 24 years of my life, I have survived every death sentence that has been handed down to me. Despite all the complications and limitations that I have with my disease, I am still better off than others in the same situation. But I know that my luck will end and the pain and sickness will only progress until my body gives out. I know this because I see it happening with my aunt and my mom. They both have lupus as well.

My aunt, my mom and I have all thought about suicide because of our lupus. It’s hard to live with the pain and sickness that it causes, but it’s harder to live with the pain and hardship that it has on the ones we love. We are not blind to the fact that our illness takes a toll on their emotional well-being and that it creates financial hardship. We’re very aware of how hard it is on the ones we love and that just makes it so much harder for us to live with the Lupus. Now, I’m not saying we’re all going to commit suicide, but it is something that we’ve all thought about.

Although, it is different for me because I’ve attempted suicide. I’ve struggled with depression since I was about 15 years old. One of my friends, a person that I grew up with committed suicide and, shortly after, my grandma passed away. Those losses turned my world upside down. I can’t tell you the events surrounding my first attempt because I don’t know what made me snap. I didn’t plan it and as far as I remember, I wasn’t even thinking about it. What I do remember is that somehow I was standing in our bathroom and taking a handful of the nitroglycerin pills that my grandpa left behind when he moved to New Mexico.

Over the years, I’ve had several attempts and it’s something that I really struggle with because it scares me. All my attempts were impulsive and unplanned. I wasn’t thinking about it, but somehow I ended up doing it. When I read about Robin William’s suicide I stopped writing this and erased most of what I wrote as to lessen the amount of triggers that it held for me and that it might have held for others reading this. Why? Because when I read about his suicide it chilled me. No note, which means that it was something that he did impulsively and that’s something that people don’t understand about suicide.

Sometimes, it just happens and that’s what scares me the most about my experience with depression and suicide. It just happens and you never know when or what is going to cause your mind to snap. When it happens you’re not thinking about anyone else, you’re not even thinking of yourself. You’re just hollow, like everything you are is just suddenly gone and there’s nothing left but numbness.

Most days, I’m alone and most of the time I’m okay. Then, there are days when I wake up and I feel that numbness weighing on me and it terrifies me. Those are the days when sometimes I just cry or I’m doing something and it seems like minutes, but when I look up or away from what I was doing, I realize that I’ve just been sitting or standing there for hours doing nothing. Those are the days that scare me because I’m afraid that I will just slit my wrists, swallow pills or hang myself for no reason at all.  The days when when I try not to talk to anyone or be around anyone because they take my fear and silence as anger or they look at me and I see sadness there because they don’t know what to do. Those are the days that are really hard for me, when I can’t be or even pretend to be okay around those I love.

So why pretend? Living most of my life with lupus and dealing with depression you learn that there are somethings you have to hide or leave unsaid for the sake of your loved ones. I think this passage from John Green’s The Fault in Our Stars explains it perfectly.

“Much of my life had been devoted to trying not to cry in front of people who loved me, so I knew what Augustus was doing. You clench your teeth. You look up. You tell yourself that if they see you cry, it will hurt them, and you will be nothing but a Sadness in their lives, and you must not become a mere sadness, so you will not cry, and you say all of this to yourself while looking up at the ceiling, and then you swallow even though your throat does not want to close and you look at the person who loves you and smile.”

I know some people, including family that reads this might be concerned, but they should also remember that this is me. I am a survivor and I can handle this as I do everything else that I have to deal with. I know that this is something that I will struggle with and fight for the rest of my life, but I also know that I’m pretty damn stubborn and I won’t stop fighting.

But I will say this……

If someone comes to you for help with depression or any kind of illness, I know that it is almost reflex to spout tiresome cliches about positive thinking, bible scriptures, “it’ll get better”, or “it’s all in your head”. Please refrain. Please, Please Refrain.

It takes a lot to admit when help is needed and when we ask, we are asking the one person in the world that we trust enough to see us at our weakest moments. We don’t need positive thinking, bible scriptures, empty promises or to hear what we already know because we’re aware that we have a mental illness, which means it’s in our head. We need you to listen and understand that at that very moment we are literally broken and don’t know what to do. You may not know what to do either and that’s okay because what we need is to know that someone is hearing us and that someone will just be there to help us get through it.

That’s all we need and it’s all you can do.

But the truth is that it doesn’t always get better.

Suicide happens.

We lose and it’s nobody’s fault.

We can, however, start trying to fight the stigma of depression and suicide. We need to make it okay for people to talk about it, to understand it and to be able to seek help and treatment. We need to stop saying that it is selfish, cowardly, sinful, and stop blaming those that are dealing with depression. We need to stop telling young people who are dealing with depression that they need to stop being dramatic. We need to stop telling those dealing with depression to “get over it” or that “they have nothing to be depressed over”. We need to stop viewing depression as a feeling of sadness because depression is not just a feeling.

It is a mental illness that changes your whole state of being, your personality, your behavior….everything. So, if someone says that they are dealing with depression…listen and know that at that moment you may be helping that person to save his or her own life.

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What does a Johnnie and a Mogwai have in Common?

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There are only three rules that you need to follow in order to care for a Mogwai:

  1. Never expose them to bright lights, especially sunlight.

  2. Do not get them wet, that means no bathing the mogwai.

  3. Most importantly, DO NOT FEED them after midnight.

By now, I sense the confusion because you’re wondering what Mogwais have to do with Lupus. Well living with lupus is a lot like being a Mogwai. There are rules to our care and while we do not turn into Gremlins when the rules are broken, all hell can break loose when they are broken.

For example, let’s take a look at the rules that are in place for Johnnie care.

1. Do not upset the Johnnie. My emotional well-being and stress levels directly affect my health. Unlike normal people, I can’t cry, get mad, stressed, too happy, too excited, etc because I will have a flare up. For someone like that me is easily excited about things like cheese and movies and shiny stuff, keeping an emotional balance is down right torturous.

2. Do not expose the Johnnie to sunlight or fluorescent lighting for long periods of times or without sunscreen or some kind of protective covering. I try to avoid going out during the day and I do have to be mindful of the the lighting that is used in places that I go because when exposed to the sun or fluorescent lighting, I get my stupid lupus rash on my face as well as the areas exposed to the lighting. But, it goes beyond a rash because sometimes my skin and scalp will blister and I will have a full blown flare up and that is never good.

3. Let the Johnnie Sleep. Thanks to the lupus and the lovely way that it has royally screwed up my biological systems, I rarely sleep. Sometimes I can go 3-4 days with no more than maybe 30 minutes to an hour of sleep and then I will crash. When that happens, it’s not unusual for me to sleep 18 hours straight and then the cycle repeats itself. Every now and then, I get lucky and I can get maybe 2-4 hours of sleep a night and that is great!

4. Make sure that all shower gels, shampoos, etc are hypoallergenic, phosphate/sulfate free, and dye free. Even then, there’s no guarantee that I won’t break out in a rash or that my skin and scalp won’t blister or get sores. I’m pretty much the Indian in the bubble right now because I’m allergic to something, but not sure what so every time I go to Wal-mart or really any store there’s a 75% chance that I start breaking out in hives and get wheezy.

5. If you are sick or think you’re getting sick, stay away from the Johnnie. My immune system is really compromised and I catch everything and unlike normal people who can catch a cold and be miserable for a few days, it’s much worse for me. It’s never just a cold or just the flu because my anti-bodies that fight infection ride the short bus and can’t tell what they are supposed to be attacking so they attack everything, although in my case they tend to attack my muscles and organs.

6. Be patient and try to be understanding because I can’t always do what I want to do. There are a lot of restrictions and things that I have to consider before doing ANYTHING and as frustrating as it is for you, it is 10x more frustrating for me. I don’t like to disappoint people and I really try to do it all because I know that people count on me, but there are times when it may take longer than expected or there may be times when I can’t do something at all and it stresses me the flip out and causes a flare up. So, please for the love of God, Buddha, Man or whatever you choose to worship, be patient.

7. Do not look at me or treat me like I am broken. We all have shit in our lives that we have to deal with and despite all the crap that I have to deal with, I am not broken nor am I to be pitied. I handle everything in my life the same way that everyone else does, I do the best I can. I’m very aware of how difficult and sometimes heartbreaking my life can be, I don’t need your pity and I’m not so fragile that a little hardship will break me. I’m a survivor and no matter what life throws at me, I know that I can handle it and even when I can’t, I have an amazing family and amazing friends who will help me through it.

There are a lot of other rules that I have to live by to be healthy, well as healthy as I can be. However, these 7 rules are the most important for MY care and keep me from ending up dead and from transforming into an evil green gremlin that is hellbent on causing mayhem. Then again…..I’m pretty sure the rules don’t have to be broken for me to cause a little mayhem.

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Love Makes You Beautiful

At this moment, there are seven billion, two hundred and forty-seven million, one hundred and nineteen thousand,  five hundred people in the world. Seven billion people in the world, seven billion souls and it’s funny how all it takes is just for one of those seven billion people to believe in you, to love you that can make life an extraordinary journey.

images (2)I was reading the Velveteen Rabbit today, it has always been one of my childhood favorites and as I was reading I came across this passage, which really struck a chord with me.

It doesn’t happen all at once, said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

I know there are times when we all look in the mirror and we don’t like the person we see because our nose is too big, eyes to squinty, butt too big and a million other flaws that ONLY we see in ourselves. To those who love us, we are not the hideous creatures that we believe ourselves to be. In their eyes, we are beautiful because of our huge nose, squinty eyes, big butts and a million other reasons that have nothing to do with the way we perceive ourselves to be.

DSC_0137Sometimes, I wonder what a person could possibly see in me that would make them love me?  I look in the mirror and I see a chubby cheeked gal with a Lilo nose (if you’ve seen Lilo and Stitch you know what I’m talking about) and skin damaged and scarred from a lifetime of Lupus. I see a girl who would rather eat a chicken nugget than save a chicken, a girl who would rather have her legs amputated than wear those stupid boots over the legs of my jeans and a girl who would rather spend 10 bucks on a wal-mart shirt than 30 bucks for a brand named shirt. I see a girl who would rather spend money buying comic books and action figures than spending money on anything else. I see a girl who is afraid of letting anyone close because nothing lasts forever and because not everyone can handle the reality of my life. I see a girl who sometimes hates herself for not being enough.

imagesI said before, there are seven billion people in this world and somehow I was lucky enough to find not just one person, but several amazing souls who love me, not JUST because of my freakish nature but for a million other reasons that I don’t see in myself and that I don’t even understand. Reading that story today reminded me that Love makes you beautiful and makes every moment of our journey here extraordinary. And that love isn’t always a romantic love, it’s just love. It’s not always perfect or easy regardless of the kind of love it is because believe me…it is never flawless or simple. It is filled with difficulties and hardships, but it is also filled with triumphs and joy and every moment of love is worth the effort and worth the heartbreak when it ends. Every moment of love that we experience is what makes us Real, it’s what makes us alive. So allow yourself to love and be loved, allow yourself to be seen for who you really are because as scary as that is, it’s the only way for you to be REAL and to be ALIVE.

What’s it like to have Lupus?

One of the hardest things to explain is what it’s like to have Lupus. Eighty-seven percent of all people with Lupus downplay their symptoms and pain when talking to their family and friends. Fifty-two percent minimize their symptoms when talking to their doctors. More disturbing is that seventy-two percent of all doctors admit to not knowing the severity of their patients’ symptoms. This behavior may not make sense to a lot of people, but for people like me it makes perfect sense.

10488071_814836341867347_7814860564178794058_nPeople know I have Lupus and they know I have complications, but I’ve learned to never talk about what it’s really like for me. There have been times when I tried to.  When I felt like it was safe or was desperately wanting someone to understand and know that part of me, but you learn very quickly that no one wants to know the reality of what you’re going through. They want you to be the kind of sick that is inspirational, that overcomes all odds with a positive attitude. They want you to be the person that smiles through the pain and worries more about soothing their fears and discomfort than you do about your own.

Another reason it’s so hard to talk about the reality of having Lupus is that you don’t always look sick. So people assume you’re exaggerating, lying, and just trying to get sympathy. They don’t understand that even on good days, your body is under attack and that doing the simplest tasks, from walking, doing dishes, to even showering, can really take a toll on your body. Even when you try to explain, you hear that “so and so’s cousin’s cousin has Lupus and they’re doing fine”, “it’s all in your head”, “if you changed your diet”, “you don’t look sick”, and my personal favorite, “at least it’s not cancer”. I say favorite because many of us Lupies have done some form of chemotherapy at one time or another.

So, let me tell you what it’s like for me to have Lupus.

I was nine years old when I was diagnosed with Lupus. I don’t remember much about my diagnosis, except that I spent years waiting to start growing bunny parts because I watched “Night of the Lepus” way to many times as a kid. I thought I had some kind of rabbit disease. I didn’t realize the fear was something that would stay with me. Living with Lupus is living in a constant state of fear because it doesn’t matter if you take your meds, eat the right foods, exercise or do everything right because you are at the mercy of your own immune system. There’s no set pattern as to how the disease will progress and the symptoms often mimic other diseases or trigger overlap conditions that only complicate things further. The only thing you can really do is deal with whatever challenge the day brings.

So for me, I struggle with accepting that there are limits to what I can do and that I always have to compromise. After 24 years, you would think by now that I would of made peace with having Lupus, but I fight against it every day. I fight against the pain, I fight against the sickness, I fight against the way I feel about myself when my face is rashy and swollen and the rest of me is covered in hives. I fight against every limit, even when it hurts and even when I know it will just makes things worse. I spend every day fighting just to have some semblance of a normal life and it’s absolutely exhausting.

Every day, I have to hide my fight. I have to hide my pain and my frustrations and I have to put on my happy face. I have to pretend that everything is okay and that I’m okay because the moment you’re not the “inspirational” kind of sick is the moment that others look at you as being weak, as being a victim, as wanting sympathy, as having a bad attitude, as being mad at them, as taking your illness out on them and as just trying to get out of doing something. It’s why I choose to be alone as much as possible because at least then I don’t have to pretend as much and in the moments when I do fall apart, it’s okay and I don’t have to feel ashamed or guilty for it.

Loneliness, Anger, Pain, Frustration and Heartbreak….that’s what it’s like to have Lupus for me.

What is Lupus?

As a Loopie, aka person living with Lupus, the most commonly asked question I get asked is “What is Lupus?”. Well, Lupus is a complex autoimmune disease that affects an estimated 1.5 million people here in the United States, on a global scale the number is believed to be around 5 million. According to the Lupus foundation of America, more than 16,000 new cases of Lupus are diagnosed every year and while men can develop Lupus, it is a disease that predominantly affects women of childbearing age. Women of Native American, African-American, Asian, Latina descent are 3x more likely to develop lupus than Caucasians. It is not contagious or a disease related to cancer or HIV/AIDS.

Lupus is an autoimmune disease that affects the immune system, which produces antibodies that protect the body from viruses, bacteria and other infections. However, because lupus affects the immune system it is unable to distinguish your body’s healthy cells and tissues from cells and tissues that are compromised by sickness or injury. The immune system’s inability to distinguish the difference leads your body to create auto-antibodies that attack healthy cells and tissues causing pain, inflammation, and damaging other parts of your body (skin, joints, organs, blood, etc).

There are four types of Lupus: Systemic Lupus Erythematosus, Cutaneous or Discoid Lupus, Drug-Induced Lupus, and Neo-Natal Lupus. Systemic Lupus (S.L.E) affects every biological system of the body: the circulatory, digestive, endocrine, muscular, integumentary, nervous, reproductive, skeletal, respiratory, and excretory. Cutaneous or Discoid Lupus affects the skin and causes lesions and rashes on the face, scalp, ears and other parts of the body that can last for days and weeks. Drug-induced Lupus can be caused by prescription medications and the systems usually subside once the person stops taking the medications that are triggering the symptoms. Neo-Natal Lupus is an extremely rare type of lupus that only affects newborns. The exact causes of Lupus are unknown and the effects of Lupus can range from mild to life-threatening and no two cases are ever alike. 

There is no single blood test that can diagnose Lupus and because the symptoms come and go, it can take years for a definitive diagnosis to be made. To help diagnose Lupus, doctors check to see whether or not patients are displaying four or more of the criteria established in the American College of Rheumatology’s Eleven Criteria of Lupus. The Eleven Criteria are as followed:

  1. Malar rash: butterfly-shaped rash across cheeks and nose
  2. Discoid (skin) rash: raised red patches
  3. Photosensitivity: skin rash as result of unusual reaction to sunlight
  4. Mouth or nose ulcers: usually painless
  5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
  6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
  7. Neurologic disorder: seizures and/or psychosis
  8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
  9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
  10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
  11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

Once a diagnosis of Lupus is made, your doctor may refer you to an Internal Med doctor who will be able to start working with you on developing a treatment plan. Depending on the type and the symptoms that you are experiencing, it may actually require a team of doctors that include rheumatologists, endocrinologists, cardiologists, neurologists, nephrologists, dermatologists and hematologists. The most common ways that Lupus is through the use of anti-inflammatories, non-steroidal anti-inflammatory drugs(NSAIDS), corticosteroids, anti-malarials, immunosuppressives, anticoagulants, and monoclonal antibodies. Early diagnosis and treatment of Lupus is extremely important because there is no cure. The earlier the diagnosis is made and treatment begins the better chances you have at being able to manage the symptoms, lessen the chance of permanent damage to your organs and live a long, full life.

And that boys and girls, is just simple explanation of what Lupus is. To learn more about Lupus, visit www.lupus.org.