May is Lupus Awareness Month!

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I’ve been battling this disease for a long time and I must say that it sucks!  Prednisone sucks!  Pain sucks!  Your body killing itself sucks!

SLE or Systemic Lupus Erythematosus  can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.  Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve.

While there’s no cure for lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medications, such as anti-inflammatories and steroids.

I have Lupus (SLE) and it has given me problems with my Kidneys, Heart and Lungs.  I also get the neuropathy in my hands and feet, as well as skin rashes, photo sensitivity

The side effects of the Prednisone is almost as bad as the disease itself.  From the weight gain, blood sugar increase and rage, you look like a chipmunk with a cheek full of nuts!

So, what do you do when your body produces antibodies that should kill off infection instead attack your organs?  You pray, a LOT!  You beg to feel better.  You hope for a cure and you have a stronger faith in God that you will make it until the next day.

Most people who have Lupus also have another disease that effects them as well.  Mine is Fibromyalgia, which is equally sucky.

This disease effects each person differently and is hard to diagnosis.   Only 20 years ago, Lupus was a death sentence with only about 4 in 10 people surviving.

Some people require chemo therapy to combat Lupus, shutting down the immune system so that it doesn’t continue to attack the major organs.  It’s hard to believe that we have to shut down our immune system to combat our internal death.  Nothing like your body hating you so much that it wants to kill you.  Ha, ha.

I’m on kidney medication for the rest of my life; because Lupus causes me to get infections as well as blood in the urine.  I have chest pains due to swelling of the lining of my heart and lungs.  I have to be careful around those who are sick; because I am 75% more likely to get what they have, only worse.  I’m more susceptible to bronchitis and pneumonia.

Skin rashes are quite common for me, especially if I have been out in the sun for long periods of time.  It’s why I always try to wear a hat and my sunglasses when I go out.  It’s not unusual for me to have that “butterfly” rash on my face, to run a fever and hurt.

Put On Purple!!!!  May 10th is World Lupus Day.  As purple is the ribbon color for Lupus, I encourage people to wear purple on the 10th in support of the need of more research, awareness and knowledge for this autoimmune disease.

For more information:  http://www.lupus.org

 

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Lupus Awareness Month

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That’s right, May is Lupus Awareness month and let’s just say I have been miserable all month.  UGH!!!   I hurt so badly that I can’t even breath!!!!  For some reason, my right leg (ankle, knee, hip joint) are throbbing with pain.  My head is splitting in two and no amount of medication is helping me.  I feel like I’m next to death and I am exhausted.

There is so much we don’t know about this disease and so much that goes wrong.  One of my favorite places to visit on the net to get information and “talk” to fellow sufferers is http://www.butyoudontlooksick.com   It is a great source of information and understanding for those of us who suffer from this INVISIBLE DISABILITY!!!

This site is also the home of the “Spoon Theory” which helps some people to better understand what it feels like.  I have a friend who read it but still doesn’t get it.  I just think he’s too thick headed to understand or just doesn’t want to understand.  I slept for 8 hours last night, woke up for 2 hours, then went back to sleep for five more.  I’m trying to stay awake right now; but with my body working on overload, I’m sure I’ll be asleep sooner rather than later.

What is my body doing to me?  It’s on overload.  My body is on high alert, fighting off an enemy that doesn’t exist.  What is it fighting?  My body organs.  With no more infection inside, my cells have decided to fight off itself.  I’m exhausted all the time; because my body never truly rests.  All the time, my  body is fighting.  White cell count HIGH!   This has left my quality of life in the toilet.

There is something to smile about, though.  Lupus used to be an automatic death sentence, however; it isn’t necessarily one today.  With research and new medications, there may be a cure soon.  At this point, they can only give you things to help with the pain, maybe help with the inflammation and to ease your suffering a bit.  My bad luck is that I am allergic to narcotic pain relievers, so I only can take aspirin or  Aleve.  I can’t even take Motrin due to my allergy it.

I go outside and the photo sensitivity just kills me.  I LOVE living in Florida; but I hate what the sun does to me when I’m in a flare.  My head is hurting so badly that I’ve got my monitor brightness turned down and am sitting in the dark.  I’m mostly typing this with my eyes shut, since I learned to type as a teen.  I’m hurting so badly.  I want to cry; but I don’t have the energy and I know that it will just make the pain worse.  It is so bad I want to vomit from it.  I can’t take much more of this and yet, God keeps me here, so I know he has a plan for my life.  I sometimes wish he’d let me in on it.

This reminds me of a guest pastor who spoke at our church one day.  He told the congregation that if we’re still in pain, still in need of healing and God hasn’t helped us, that we’re not doing it right.  That we’re not sincere in our quest for healing.  I was really upset by this because he made me feel like I was not worthy and that is totally not what a pastor should do or say to those who look to him for guidance.  I was really happy our Pastor came back the next week.

Anyway, I’m gonna jet because I’ve reached the end of my endurance and hit the hay.   Thanks for taking the time to read this and try to understand a little more about invisible illnesses.

10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.)

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when its just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally, I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard.  Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as complete acceptance, there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine“sometimes even healthy“ to feel angry and frustrated but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything:  “emotions, symptoms, and otherwise“ that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to cure me of my illness, it certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom; but I make a  point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one until I realize that everything is indeed okay