Myasthenia Gravis Deserves a Flamenco Heel to the Throat

I rarely watch movies, but on a whim I decided to watch Shall We Dance starring Jennifer Lopez and Richard Gere. People who know me well would be a bit surprised that I had any desire to watch such a movie. I’m more of a documentary, adventure, and mystery-theme person.

Surprise! I happen to also be a fan of dance and choreography and I like JLo’s dancing. The real reason I watched it, though, was because I really miss dancing.

Yes, that’s a joy that myasthenia gravis (MG) has taken from me. I used to study Flamenco, Salsa, and ballroom dancing. Dance is not only great exercise, but it always gave me a feeling of grace and freedom. Sliding across a dance floor with or without a partner (often the case in Flamenco dance) is like a moving meditation. My mind could not be on anything else while dancing. I had to focus on not landing on my arse!

I’ve tried a few old routines at home since the evil MG came on the scene and my legs wouldn’t work with me for even two minutes of it. I can only kick back and mentally dance now. As angry as MG makes me, it would be AWESOME to be able to do a five-minute, floor-stomping Flamenco routine! I still have my Flamenco shoes and skirt with the hope that one day I’ll meet up with this elusive character known as Remission. Perhaps, my shoes and skirt will join me to grace a dance floor again someday.

See this heel, MG? I’d like to kick you in the throat with it!

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Dear Friends and Family of Autoimmune Disease Sufferers

Turbulent sea ahead.

        Turbulent sea ahead.

Do you have a friend or family member with an autoimmune disease? Perhaps they have Lupus, Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Hashimoto’s Thyroiditis, Myasthenia Gravis (MG), or … the list of diseases goes on. Since autoimmune diseases like to travel in packs, it’s VERY possible a person suffers from multiple autoimmune issues at the same time.

Dealing with these diseases alters people’s lives. They often impact every aspect of a person’s life. Many of us sufferers have trouble keeping up with our previously normal daily routines due to weakness, excessive fatigue, intense body pain, breathing issues, etc. It’s challenging to schedule outings and get-togethers far in advance due to the unpredictability of symptoms. One minute we feel relatively okay and 10 minutes later we could be falling-down weak or in so much pain we can’t recall our names. Between the diseases themselves and the poison we often take to minimize suffering, we often feel nowhere near our old normal selves. We live in a new normal and it’s difficult for those not suffering to understand that.

Please do not try to play doctor with us. We know you mean well, but if you think we haven’t out-researched our conditions and every possible form of natural and pharmaceutical treatment, think again. Most of us go way beyond Google searches and WebMD!

We’re not lazy. We’re not trying to be difficult. Most of us want our old, pre-disease lives back. Some of us have to sacrifice our jobs, our ability to drive, our ability to walk without assistance, and the way we go about things every single day. Spontaneity is not usually a part of the day in our new-normal lives.

Just because we now live in a new normal, it doesn’t mean we want to give up our friends and family. We just want you all to be patient and understanding. We do not want to ruin your plans. We don’t want you to act weird around us. We also don’t want to feel like a burden to anyone. Treat us the way you used to treat us. Stop by for an occasional visit. Invite us out to lunch, dinner, a show, but be understanding if we’re not feeling up to going out. The last thing most of us want is to feel left out and alone. Maybe our visits will have to be shorter than they used to be, i.e., no more late or all-nighters! That’s okay, time can still be well spent just hanging out and talking or preparing food together at home.

I’ve seen so many people come together to help friends and family members after a diagnosis of cancer. Cancer treatment often involves chemotherapy, radiation, and surgery and the horrible side effects from treatments. Some people will endure treatments for a few months, a year, sometimes longer. The goal is remission and freedom from the cancer. With many autoimmune diseases, immunosuppressants such as prednisone and chemotherapy are often used for treating/managing symptoms with the same nasty side effects and the hope of remission. Some autoimmune diseases are also treated via surgery, as in the removal of the thymus gland in MG patients. This sometimes results in remission, other times symptoms continue. There is no timeframe for treatments for autoimmune diseases. Treatments, in one form or another, go on for the remainder of life, or until you go into remission. Some lucky people have lengthy or intermittent remissions, while others never achieve remission.

Many people die from cancer; many people also die from autoimmune diseases. Ironically, thanks to the medicines offered for autoimmune diseases, some people develop various forms of cancer. It can become a double-dose of suffering!

Be patient, be kind, be understanding, and don’t forget about us. Our bodies are trying to kill us. We need all the help and support we can get to fight back.