I have what?!

It took several years for a diagnosis; one that I had never heard of but knew wasn't good. I had been through every kind of medical test known to man, had an unreal amount of blood work, and seen numerous specialists only to arrive at this rare diagnosis. I, of course had to be a special find, having more than one autoimmune disease. The first had its own strange name, Scleroderma, (part of a diagnosis called CREST), the second being SLE Lupus. Having no idea what any of this was, I was then sent home with a prescription for Plaquenil, crying, to begin the terrifying task of researching on the internet.

So, what is Scleroderma? It is an autoimmune disease that causes the body to produce too much collagen. This collagen not only hardens the skin causing loss of movement but also effects every part of the body and specializes in attacking the lungs. The nurse at the rheumatologist had already instilled fear in me by telling me about a police officer that had Scleroderma, his arms had hardened, and he no longer had the ability to bend them. Pictures and scenarios swam through my mind, drowning me in fear of this new unknown.

There are too many autoimmune diseases to name. Too many to even have their own color of awareness ribbon!

My Scleroderma was a part of CREST, and not the toothpaste. According to St. Luke's KC, "CREST syndrome, also known as limited scleroderma, is a rare autoimmune disease that affects the skin and connective tissues. It's characterized by a tightening and hardening of the skin, and the acronym CREST stands for the five primary features: Calcinosis, Raynaud's phenomenon, Esophageal dysfunction, Sclerodactyly, and Telangiectasia. " For more info on Scleroderma and CREST, visit Scleroderma | Complementary and Alternative Medicine | St. Luke's Hospital

I had no idea what any of these were but knew it could not be good. The sites held a barrage of terrifying images ranging from simple sores to amputated limbs, and skin that no longer looked like skin. These strange words with scary characteristics were now a permanent part of my life, my two teenage daughters, and my parents.

Now to research SLE Lupus. According to St. Luke's,

"Lupus is an autoimmune disease. This means that the body's natural defense system (immune system) attacks your body's healthy tissues instead of attacking only things like bacteria and viruses. This causes inflammation.

Some people with lupus have only mild symptoms. But the disease is lifelong and can become severe. Lupus may cause problems with your skin, kidneys, heart, lungs, nerves, or blood cells.

Systemic lupus erythematosus is the most common and most serious type of lupus. But there are other types of lupus. They include discoid or cutaneous lupus, drug-induced systemic lupus, and neonatal lupus." To read more about Lupus visit Lupus (Systemic Lupus Erythematosus)

The sites all gave lists of how to live with Lupus. Here is some of the advice from the above website,

"How can you manage it?

One of the goals of controlling mild to moderate lupus symptoms is to prevent flares. You can:

• Get plenty of rest. Some people with lupus need up to 12 hours of sleep every night.

• Avoid the sun. Wear sunscreen and protective clothing when you are outside.

• Exercise regularly to prevent fatigue and joint stiffness.

• Pace yourself. Don't do too many activities."

There were many other "ways to manage" and outlooks that presented more terrifying prospects for my health and life ahead. Organ failure, medicines that can make you lose your eyesight and have bad side effects, chemo as treatment, specialists and tests forever...just to name a few.

This was the start of new journey, one I was not excited to begin but was in fact terrified, worried, and very, very sad.

How long will I live?

How quickly will this progress?

What will mine and my family's lives look like?

Will I be able to do all the things I want with my daughters?

Not to mention, I had just gone through a difficult end to a relationship. Did this illness damn me to being alone forever? I mean, who wants a single mom that not only has all her baggage from the past but also has these incurable autoimmune diseases and all the costs, medicines, doctors, tests, and limitations that go along?!

It seemed as though my life would be just one long series of pain and misery.

Now at the 12-year mark since my diagnosis, where do I stand? Not alone but married...not living pain and misery but keeping a new hope and living day to day. Yes, I still have pain, and I take enough medicine to have my own pharmacy, but I have a good life. One that is much better now that I have decided to not live my life as someone with several incurable diagnosis. I choose to see what I can do, not dwell on what I cannot. I choose to see that even though I am labeled with all of this, I am still far better off than a great many. I choose to live, to do, and to hope.