Life of a Lupie – Living with Lupus

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You may have heard or read in the media recently that young actress and pop star Selena Gomez has Lupus and was coming out about her recent battles with the disease. My daughters and I discussed it, with one recalling that I had read over a year ago in a Lupus support group about her illness, and the other adding that now that she has really started talking about it, maybe it will finally get recognized as a true illness and some of the mysteries, and myths, of Lupus begin to fall away.

Selena Gomez

What is Lupus? You can read a great article about it HERE.

My daughters are 15 and 20 and have grown up with Selena Gomez and consider themselves fans of hers and as the good-hearted girls that they are, are concerned for her. They know about Lupus. Their mother, me, lives with Lupus, and they share multiple family members linked maternally that also have Lupus. One of my daughter’s has Celiac Disease. While research on this is still relatively young, it is believed that there is a link between the two diseases, as well as Celiac with other Autoimmune Diseases, or that they overlap each other. My other daughter, has been living with kidney issues for 10 years. Lupus is a possibility for their futures. I don’t want it to be, but we know that the chance is there. We monitor their health and if at any time they start to develop the mysterious illnesses that plagued me for years before I was officially diagnosed, I will make sure they get the medical treatment they need. I will advocate for my girls because I don’t want them to end up where I am.

Where I am.

Today. I am in my pajamas and robe. Alternately burning up with fever and then overcome by chills. My kidneys have not fully recovered from their infection, which hit me hard on the first day of our recent family vacation to Walt Disney World, and the pneumonia I developed there in conjunction with the nephritis is holding on strong. I am in more pain than I can even verbalize and I can’t stop crying today.Lupus 2

Last week I shared a wonderful article on my personal Facebook page entitled I have Lupus: 8 things I Wish People Understood About My Disease and got some great feedback from friends regarding it. One of my friends, Tina, said,

“I love it when people are this open & honest about their illness. While I understand some want privacy, it is important for people to share like this because it educates others.”

I agree with her and at the same time that I am agreeing with her, I am realizing that I am my own voice. I have a platform. I have some reach. No, not Selena Gomez reach, but I, too, could be educating others, and I get mad at myself when I realize that I am not.

So many of my friends know I have Lupus, but other than many of them initially thinking it was ‘just arthritis’ (it’s not), they don’t know fully what my life with this disease is because I don’t tell them. When you are chronically ill, your life changes. You stop telling people about your health issues because there are ALWAYS issues. You lose friends because they see you as flaky when you cancel plans so often. Not because you want to, but because you are out of spoons and just can’t.

Don’t know what I mean by spoons? You can read about the Spoon Theory HERE.

The impact of Lupus on the body
The Impact of Lupus

In the article mentioned above, the author details her own life with Lupus and her struggles. She is young, in her 20s, and while we have the same disease, our diseases are not the same. We both have Systemic Lupus Erythmatosis, but they are vastly different. Systemic means system wide, and this form of Lupus (there are four forms all together) affects entire systems. For me, that means my

  • Kidneys, bladder and overall urinary system
  • Respiratory System
  • Nervous System
  • Cardiovascular System and
  • Digestive system

all have some type of impairment. Even the systems I didn’t name have had their brief periods of problems. The really sucky thing is that for me, one system often triggers another to go haywire at the same time. Case in point, not only am I having some lovely kidney issues right now, I have pneumonia. Again. Breathing is difficult, I get winded quickly and easily and need either nebulizer treatments or a rescue inhaler often. I am nearing a point where my 43-year-old, never smoked self is going to have to have a tank of oxygen with her at all times. In addition, the antibiotics have stripped my digestive tract and so I am enjoying my many visits to the bathroom to be sick in one way or the other. And if that wasn’t enough, all this together is too much for my nervous system to handle, so I have had to increase my seizure medicines to prevent breakthrough seizures.

This is my Lupus. Every day it is something. Yes, there has been years when I was in a stage of remission, when I was strong and able and did as much as I could and then pushed myself to do even more. I am currently not in remission though, and haven’t been for a few years. There has been periods of ‘better’, but better only lasts until the next flare rears its ugly head.

I share this with you today because like my friend, Tina, said, sharing details like this help to educate others. There’s a few other ways I want to educate about Lupus today:

  1. Chemotherapy is often used to treat Lupus. That doesn’t mean Lupus is cancer. I have had cancer. It was actually during my chemotherapy that a few doctors noticed some improvement in the mysterious ailments that they had never been able to figure out where they were coming from. I had to get cancer to be diagnosed with Lupus! Talk about irony!
  2. There is no cure. None.
  3. Other medications used to treat Lupus can be harsh and life altering. They change your body on the inside and the outside. I know I don’t look like my teeny tiny self during my remission years or before I was diagnosed. I don’t need to be reminded that I look tired, puffy, pale, etc. I know. I have a mirror.
  4. You can’t catch this from me but I can and will catch anything you may be carrying. Please stay away from me if you are sick, have been sick or have been in close contact with people who have been sick. A virus to you could mean hospitalization to me.
  5. Please, please, please stop telling me, and every other person living with a chronic illness that if they just did this or ate that or slept in a cocoon of butterfly silk while listening to a tropical rain-forest and drinking a special tea that they will get better. Stop saying, “Oh, my second cousin’s sister-in-law had that and she…” did whatever miraculous thing she did and is now cured. It doesn’t work that way. Read number 2 again. No cure. Periods of remission can be short or they can last for years and years. Remission is not cured. Remission only means no current active disease.

    Remission: a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

     

  6. It is okay to ask questions. It is okay to express concern. I just ask for compassion, empathy and understanding. Not pity.

I hope that you nor your loved ones ever have to suffer with an Autoimmune disease, especially one as difficult to diagnosis and predict the tract of like Lupus is. If you feel like you may have Lupus, see a rheumatologist. For more information on Lupus, please visit The Lupus Foundation of America. 

I realize now that my silence on what I live with has only hurt myself and left friends and family unfamiliar with my disease. My goal is to change that, to be more open, more transparent. We can’t know what others are going through if they don’t share, and this is one illness that needs to come out of the dark. Know Lupus so that one day there may be NO LUPUS.

Blessings to you all!

Your Peachy Queen,

Charlotte Dawn

 

Could you have Lupus?
Could you have Lupus?