May is Lupus Awareness Month

You May Not Know… I Have Lupus

 

What is lupus? (see https://www.lupus.org/ for more info)

Lupus is a chronic autoimmune disease that can damage any part of the body (skinjoints, and/or organs).

“Chronic” means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune systems produce proteins called “antibodies” which protect the body from these invaders. “Autoimmunity” means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”). As a result, it creates autoantibodies that attack and destroy healthy tissue.

Cindy is the owner of Cindy Meisch Photography and has been living with Lupus all of her adult life. She is a photographer in the East Memphis area serving Bartlett, Lakeland, Arlington and the surrounding commumities

Cindy is the owner of Cindy Meisch Photography and has been living with Lupus all of her adult life. She is a photographer in the East Memphis area serving Bartlett, Lakeland, Arlington and the surrounding communities.

How did I know I had Lupus?

As far back as I can remember in my family I was always “the sick one” and often called a hypochondriac.  Did I have bad parents? No. I had amazing parents that always listened to me. I had doctors that at the time had no idea what Lupus was.  There are several different types of Lupus. I have NPSLE Neuropsychiatric lupus. The type of Lupus I have is rare and it attacks my brain and nervous system.  I have had seizures, a condition called Raynaud’s Syndrome where I lose feeling in my fingers and toes,  Extreme Fatigue and shortness of breath.

When I moved to Tennessee in 2014 the movers were loading the last box on the moving truck from Chicago and I collapsed and started seizing. Luckily my kids were not around to see it. But, I probably scared the bleep out of a handful of grown men. You see stress is a big contributor to my illness and they say moving is one of the most stressful things you can go through in life. That was my second seizure. My first was in college after completing a full day of final exams. Doctors truly had no idea it was Lupus. After all I showed none of the classic symptoms of Lupus which is typically a butterfly rash on the face. I was told it was my bodies way of dealing with stress and it just shut down.

I moved to Tennessee and had to seek out a new Neurologist. Since I had no family or friends in this new area I had to refer to my insurance and who was in my city. He had no answers than it must be stress please see a psychiatrist. They drew a lot of blood and ran a test for everything but Lupus. About a year went by and I remember standing in my home saying “my arms literally feeling like cement.  Something is wrong….”  I rested and it seemed to go away. I was shopping with a friend and I had a seizure in the middle of the mall. (Thank God she is still my friend!) I know I scared her.

Well, the South is an amazing place because everyone accepts you and knows everyone. One mention to a new acquaintance that I wasn’t happy with my choice of doctors had me changing Neurologists.  After explaining all of my symptoms he looked at me and asked “have you ever been tested for Lupus?”  My response “Ummm what is Lupus?” Refer to link above… there was every symptom I had. At that time there was 1 test for Lupus. It tests the ANA level in blood. Sure enough it came back positive.

A purple butterfly is a common symbol used for Lupus. Many people have a rash across their face with Lupus and it is referred to as a butterfly rash.

What happens after a Lupus diagnosis?

The specialists that treat Lupus is a Rheumatologist.  One of the only medications used to treat Lupus is a drug that was manufactured to treat malaria. It is used to suppress hyperactive immune cells. What it basic means is that everyday I take a cocktail of meds to tell Lupus to calm the heck down.

How has Lupus affected my life?

Well first learning to control my stress and actually learning to ask and accept help from my amazing friends. Learning that it is okay to rest. It’s okay to say No.

I am Me! Lupus does not define me. I am Cindy and I have Lupus. Lupus does not have me.

My kids are my #1 priority. I base my entire schedule off of them. I first look at what the school schedule and their extra curricular activities are and then mark the days I am available to  photograph on my calendar.  Lupus is NOT contagious in any way. But, I had my children BEFORE I was diagnosed. You may be wondering if I passed Lupus onto them. The answer is NO! Thank God! There are roughly 4 different blood tests now that can test for Lupus markers. My children have none.

I know that if I have a day of shooting the following day my body will require rest. And that is okay.  If my kids have an activity I probably won’t be working the next day especially if it means walking the golf course with my daughter or sitting for hours watching my sons band performance.

Because I take so many medications I have read anything I could get my hands on to help my body.  For me personally I found that my diet has a big affect on how I feel. I started following a fellow Lupus warrior on Instagram that had great results following a Paleo diet.  Cutting out gluten and white sugar really is something I should have been doing anyway. Although they don’t really make my Lupus worse, cutting them out has made me healthier.  For me a big trigger is Nightshade vegetables. Peppers, eggplant, nuts from the ground (tree nuts are good), potatoes and my beloved tomatoes.  If you had a sister that grew the most amazing tomatoes you have to know that the price my body pays in inflamed joints the next day is worth it!! There are several studies out there that link nightshade vegetables to joint inflammation. But, if you’re dealing with any long term illness keeping a food diary can help you pinpoint the things that could trigger a flare.  Of course I consulted my doctor with every step.  I believe I have one of the best Rheumatologists in the Memphis area.

Lupus is actually an “invisible illness” Sometimes I am grateful I don’t look sick. But, on the other hand I have a handicap placard for my car. Depending on where I am and the day I am having I may have trouble simply walking 50 feet.  Being judged by strangers is hard. What does sick look like? I am still going to put on makeup. I may have a dress on and look fancy BUT that dress was one article of clothing and if I should happen to fall asleep in it I will be comfortable.

Wow you’re still reading? Thank you!

I don’t want you to feel sorry for me. I know how to manage my life, own a business despite my illness. Photographing is one of the only times I forget completely about Lupus. I become another person when I am behind the lens. It is my escape into a world that I created. I will photograph for as long as I can. I am so very grateful for all the clients I have and all the memories I have been a part of!

This Month!

You will see a lot of purple this month and on May 18th it is Put On Purple Day to show your support for anyone battling Lupus! If you do I would love it of you give me a little shout out on Facebook or Instagram so I can say Thank you!

 

Blessings,

Cindy

 

Speak Your Mind

*