You Only Get It If....

You know how sometimes you'll talk about something to someone trying to explain some shiz and they don't get it because they haven't ever experienced it? Yeah, something like that on here.

Thursday, October 10, 2013

You have Sjogren's Syndrome

Venus Williams has Sjogren's Syndrome. She's an athlete. I have Sjogren's Syndrome. I'm pitiful.

Recently, I have been feeling very socially awkward. Especially in my speech. I am having more difficulty forming sentences and moving the left side of my mouth to pronounce words. My dry mouth has been more prominent than usual. I have found myself afraid that this will be permanent.

I've already seen a decline in my fine motor skills. What I know other's perceive as just being clumsy, I know is Sjogren's messing with my muscles.

Sometime that's a relief to me. To have something like that (that I know isn't normal) and have an explanation for it. I also feel like people are seeing my SS as an excuse. I have a hard time talking to people about my disease. I either feel like an info-mercial or a PSA. I don't like feeling like either of those. I don't think that anyone in my immediate circle cares about what it is or what my symptoms are.

One of the side effects of taking Plaquinil is vision problems, such as blindness. I have noticed in my left eye, there are dark shades and it tends to get tired more quickly than the right. Plaquinil is used to treat malaria, but they give it to patients with auto immune disorders to help alleviate some of the symptoms (such as dryness and muscle erosion and joint damage.)

I also have a hard time getting up from a sitting position. My hips hurt all the time. ALL THE TIME. I have awakened from sleep to flip sides as if I were a HUGE seal trying to turn on sand. {There wouldn't be that thin layer of water to help the seal turn, so instead it would have to flop in small angles to switch sides on which he was previously resting.) At this very point in time, I must give a million praises to my husband. I need to give up to him as much praise as there are stars in the sky; as much mystery there is left in the furthest reaches of the ocean; as much praise as a woman can give a man for being a man. He has never complained about needing to jump out of bed to get one of the kids. Not a single time. I'm not sure if he understands that I just physically canNOT get out of bed as fast as he can or what. I don't care; I appreciate him so much and for so many reasons. I would, with no hesitation, get up to comfort my child even if I had not slept in days! I just physically cannot get my body to respond as fast as his can. {Which in all honesty, I do get jealous of. I get jealous of a lot of people for not having Sjogren's EVEN THOUGH I would never wish this disease on any one.}

I walk with a limp sometimes. When my hip hurts bad enough.

I want people to know that I have Sjogren's because sometimes, for me, getting up out of my chair under two minutes is a win for me. Sometimes, going down stairs terrifies the shit out of me, and yet I do it almost every other day! I also want them to know so they know that my speech isn't shitty and I do know what I'm talking about I just need a few minutes to think about it.

I want to just wear a sign or something that says: I have Sjogren's. That's why I am a complete mess.

I don't actually want to tell anyone about it, because it's depressing. I will succumb to this disease and it may be sooner that what I expected. I don't want to depress people. I just want a bit of praise when I don't fall walking down stairs.  Things everyone expects praise for, right?