What Is Lupus?
Let’s start by talking a bit about what Lupus is, and why it’s often misdiagnosed. What is lupus? One thing I have noticed since being diagnosed with lupus is that people really have no idea what it is and what it does to the person suffering with it.Lupus is an autoimmune disease that occurs when your body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body parts or systems, including joints, skin, kidneys, blood cells, brain, heart, and lungs.
Lupus is very difficult to diagnose because symptoms often mimic other conditions. The most obvious sign of lupus a facial rash that is often referred to as the butterfly rash because it resembles butterfly wings the way it goes across the cheeks and nose. it occurs in many but not all cases of lupus. Source: Mayo Clinic
Symptoms Of Lupus
The most common symptoms are:
- Swollen and achy joints
- Headaches, confusion and memory loss
- Loss of or thinning of hair
- Malar Rash (butterfly rash)
- Skin lesions, or lesions in mouth and nose (sometimes made worse by sun exposure)
- Fingers and toes turn white or blue in the cold or under stress(Raynaud’s Syndrome)
- Shortness of breath
- Chest pain
- Dry eyes, mouth or nose
While these are the most common there are several more and can manifest differently in each patient. The symptoms I suffer with are, painful swollen joints, headaches(constant), ringing in my ears, dizziness and light head (constant), lesions in the mouth and nose, shortness of breath, chest pain, dry mouth, EXTREME fatigue (to the point I can sleep for days), confusion, memory loss,thinning hair, occasional fever, gastrointestinal issues, depression (which at times is overwhelming), rashes, recurring sinus and ear infections and COPD.
I have only recently been diagnosed so treatment hasn’t really been started. I have been researching and investigating natural ways to relieve symptoms. I sometimes think the more medication a person is on the more they need and that’s not what I want my life to turn into if I can avoid it. At the same time, I am so miserable I may have to take the other route until I find out what works for me. The depression is by far the worst part of it for me right now. My faith in God gets me through each day some easier than others.
Misconceptions About Lupus
There are a lot of misconceptions out there, I’m going to list a few I’ve personally dealt with and some I’ve read about during my research.
This is the one that drives me crazy, you don’t look sick. Today I may not look sick but tomorrow I may not be able to get out of bed. Without makeup I look like I have been abused, my eyes are black my cheeks are red and my lips are sandpaper. Some people lose weight I have gained a lot.
Here’s another recently said to me,” I have a co-worker who says they have lupus he’s never sick and doesn’t miss work…so why have you been off work 5 months?” Ahh, I have been dizzy for 5 months and at times can’t bare to move my head. The ringing in my ears is so loud I can’t hear and sometimes I fall asleep talking to people. There are days it’s not safe for me to drive so be thankful I’ve been off work and off the roads. These are the two that have upset me the most.
Here are a few more I read about, some I’ve heard personally others only read about:
- Men really don’t get lupus. While women are 10-15% more likely to have lupus men do get it
- That we are lazy. extreme fatigue is very common so we actually need more rest than you do. (I had 3 naps today it has been a rough one.)
- Exercise is dangerous. Lupus sufferers have to be careful and do mild exercise that isn’t painful but exercise is not dangerous.
- You have to have the rash to have lupus. Only about 40% of lupus patients have the butterfly rash
- Lupus is contagious. I have had this question because of the fevers, lupus is not contagious. It’s not a virus
- Lupus is rarely heard of. Actually, around 1 million Americans have lupus 90% are women
- Are you going to die? Another I have been asked, my response…..we will all die eventually. However, lupus has no cure but with treatments we can live a long full life.
Thoughts From A Newly Diagnosed Lupus Patient
I am not lazy but I am exhausted 80% of the time. Nothing about this has been enjoyable, so saying I’m “lucky” because somehow it sounds like a vacation to you. I would rather feel good and be at work. This is depressing and most days I feel useless and frustrated because I can’t do the things I used to.
The crazy part is this all started with a trip to the emergency room in August 2017 for what I thought was a heart attack (thankfully wasn’t). It was then diagnosed pancreatitis later I find out gall stones. Surgery was put off because of recurring infections. The dizziness and ringing ears started out of nowhere in September (and hasn’t left). From then on new symptoms keep popping up. I have had cat scans, ultrasounds, mri’s blood test after blood test. I have now had 4 positive ana tests and went for a 5th today by request of the rheumatologist.
Keep this in mind
Please don’t think for one second I’m not sick, because I am. I am also angry, frustrated, depressed and extremely jealous of everyone who has good health and out there enjoying life while I sit here in pain, misery and tears.
I want respect and understanding not pity or doubt. Pray for me, lift me up. Don’t look down on me. Don’t pity me. Offer support, but only if its because you really understand and care.
If you don’t understand what I’m going through ask me what a day, week or month is like for me. Instead of automatically assuming I’m lazy, crazy or making it up.
That’s all for today! If you suffer from lupus or any other autoimmune disease, chronic illness, and pain leave a comment. I will add you to my prayers and maybe we can lift each other up!!
Have a Blessed Day Myla
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