Fear

I really don't like waking up in pain.  It's not about the pain itself, but about being blind sided by it.  Well, I guess that the actual pain that I experience is a close second in the race between the intensity of the pain and the pain's ability to sneak up on me and attack when I'm least expecting it.  Neither of those compares to the fear.  I don't like feeling the pain, but I'm not afraid of it.  My fears run much deeper than that.

I'm afraid of the unknown.  Lupus is a crafty disease.  It's incredibly difficult to diagnose and there are too many possible causes to peg down just one cause.  There are too many possible symptoms and since no two people are the same, comparing my lupus to anyone else's lupus wouldn't be a good comparison.  The thing is this; there are people who have lupus and are able to live long and relatively healthy lives with treatment.  Then there's me.  I'm sad that I'm not a candidate for Benlysta because of kidney involvement and the fact that I'm in an active flare.  I love that the option is there for others who struggle with the stranglehold that having lupus can get on not just us, but our families.  I'm afraid that I might not get the chance for treatment in this lifetime.

I'm scared of being taken over by lupus.  Since my type of lupus is a multisystem type, it isn't confined to just one place.  Right now, I have kidney damage and it's SLE related.  I'm hopeful that it can be reversible as long as I get out of this flare.  I have hemolytic anemia, B12 deficiency anemia, and iron deficiency anemia along with a positive result when I was tested for Von Willebrand's factor.  I'm covered in bruises almost all of the time and I never really remember where they came from.  My circulatory system isn't really ship shape.  I have Raynaud's disease so I always have to take care to not get too cold.  I have Sjogren's disease and that means that at any given time, I have ulcers in my mouth and sometimes they are too painful to ignore and sometimes I don't notice them at all.  My eyes are always dried out and that's painful, too.  I was lucky in that I don't have rheumatoid arthritis, but unlucky because I got the pain from it without the physical damage to the joints.  It's polyneuropathy and it sucks!  I have chronic insomnia and not getting enough sleep can trigger a flare, so that's something that weighs on me.  I have a feeling that I have had lupus for much longer than I thought that I did.  What other way is there to explain how out of 7 pregnancies, I only have one child.  Lupus gets to me and it's frustrating to have it happen because I feel like I'm witnessing the systematic breakdown of my body and there are limits to what I do for treatment.

I'm also afraid of being a disappointment to my husband and daughter.  There are days that I feel like they are the real victims.  They are so strong for me and I don't know if I'll ever have the words to give to them that express how much their support, love and patience has saved me.  I know that they hurt, too, but they put their feelings aside to comfort me. 

I want to expel the fear.  It has been useless so far and I want to enjoy life as fully as I can but the fear can be so intimidating and I lose myself in that fear.  I'm full of "what if's"..   I don't what anymore.