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This Is Me. I Am Lupus.

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I have systemic lupus, Reynaud’s, and rheumatoid arthritis. When you have a series of autoimmune conditions, they are usually diagnosed collectively as mixed connective tissue disease. Basically, my immune system was triggered by not only a genetic predisposition to autoimmune disease, but also by the post traumatic stress disorder and stressors put on my body in the last four years that range from my husband’s tragic death to cervical cancer surgery, and two shoulder surgeries.

The body is an amazing thing and super complex. Sometimes, if you have a genetic vulnerability, stressors place your immune system essentially in hyperdrive. When something like that happens you would think it could be a good thing since your immune system fights bad things, right? Unfortunately, that’s not the case. What happens is the immune system starts attacking the good things instead of just the bad. It starts attacking organs and joints, and pretty much no body system or organ is safe. That is why we have to take medicine that virtually kills the immune system. Some of these medicines may be the same used in chemotherapy cocktails. Fortunately, I’m not on those at this point. I pray I never get to that point.

Is lupus a death sentence? Not anymore. They used to give people diagnosed a 10 year life expectancy. Now, you can likely live a full life, but not necessarily in comfort. To live you have to take these strong medicines for the rest of your life and drastically change your life style. As for myself, if you knew me before I got sick you would have known a very athletic and active weight lifting athlete. Now, I get worn out just doing simple every day tasks. Look up the spoon theory.

Flares are all encompassing, growing from the deepest roots that weigh down my spirit and limbs like five to 10 pound weights. Each step is like walking through water. Nerves are loud. Like the sensation you get when you are standing next to the speakers at a rock or metal concert. Sometimes the lightest of touches hurt. My skin gets hot to touch. Sometimes its just my joints and sometimes it spreads to my neck, my face and other areas. My neck gets red and people jokingly say, “Did you forget your sunscreen? ” It’s OK. They don’t know that my body is screaming and turning against me.

Everything is a huge effort. Simple tasks like bathing, cooking, cleaning…It is not laziness. I cry almost every night because this is my every day and I can’t be the person I was. I push and push, fighting the grip of pain and fatigue, but eventually if I don’t give in I pay with a hospital visit. This is my every day. My day always ends in this manner. I hate it so much. I want to do so much more. A good day for me, the type of day that gets me excited, is the days that feel just like the flu. That’s my everyday – a 24/7 flu.

Brain fog…It’s so embarrassing on my bad days when my nervous system gets effected. My speech gets mixed up, I stutter, I can’t remember what I was saying. I was speaking with one of our new bar wenches, Molly, about a week ago. I was getting to know her and I began to mix my words and totally forgot what I was saying in the middle of saying it. It gives me anxiety about phone conversations. My hearing is bad and my speech gets messed up. I get terrible anxiety which makes it worse.

The alarm goes off and you lay there unable to move. If you move, your joints are so stiff and painful that the very thought of movement gives you dread in the pit of your stomach. But, you must get up. You have to get and get your kids ready for school. Life is happening and you don’t have the option to lay there. You get up and the nausea hits you because the pain makes your stomach sour. You get dressed. Wake kids, feed them, dress them and get them to school. If you can, you go to work. But you have used all you spoons already. The day has just begun so you push. Your every fiber and nerve screams but stopping isn’t an option. You must push through the wall, navigate through the fog that threatens to envelope you.

Eventually, you make it home and your partner has to help you get out of your work clothes because you are so fatigued you can’t hardly move.

Can you, “Move more?” You can’t? Then you must be “weak” and “lazy” and “uninterested in taking care of your health.”

I joke with my friends and family about my clumsiness and my accidents. Truth is, lupus has made me unsteady, forgetful and at times dizzy. This is not all the time. I assure you I take great care when I’m on the ship working. I do not take chances at work and know when to step back and rely on my crew. My gracious, I’m so blessed with them. I save most my “spoons” for my passion. I may hobble home at the end of the day, but by golly I am working my dream.

This is me folks. I am lupus. But I will never stop fighting. I will continue to sail towards the horizon, because while I have lupus, lupus will never have me.

Originally published: December 24, 2017
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