Saturday, October 12, 2013


So today I thought I would write about how I feel. I can tell people that I feel awful, but I am not sure that is a clear description of how I feel. Someone with numerous auto immune diseases have a wide variety of different symptoms. Mine have a wide range on any given day!

I wake up everyday with my hands hurting so bad and stiff. When I say they are stiff, it means that when I wake up I cant make a fist or even bend my fingers and toes. People with RA usually describe it is like feeling dead. Most night I wake up between 3-4 because this hand pain and often knee pain, hurts so bad I cant sleep.

Taking a hot shower as I do every morning often helps them feel better, but everyday is different and it might be until noon or longer before my hands stop hurting. If I sit in a position for more than 10 minutes, my body freezes up again. I am unable to move,  just like in the morning.

I ran a few errands earlier as many people do on the weekends. My first stop I was ok, accomplished what I needed. I figured I would continue onto the next errands. I got there and felt like just sitting in the car. My hands hurt, my legs hurt and was exhausted. I came home and took a nap on the sofa. My hands are hurting the most. I feel like I have the flu, I feel icky, weird almost like a headache is coming on and never does.

I am still having photo sensitivity at most stores I go into. So my eyes will hurt, like they are in fire and they are watery but they are not they are actually super dry. My skin is now peeling because I am so dry from the Sjogrens.

It is starting to get colder alot more, so my Raynauds is in full force. I wear a coat inside my house. And the warm and snugly Uggs a friend gave me. She has no idea what that simple jester has meant to someone with Raynauds. I am constantly cold, and its not just finger and toes, its an all over freezing cold.

My RA is constantly giving me troubles. I am still on a low dose of Methotrexate, because of the surgery I have had and the upcoming surgery. So it seems like it will be a while before I am able to go back on a normal dose and my infusions. Vicodin takes the edge off, but doesn't stop it.

Since the surgery nearly a month ago, all of my diseases have been over active. One in particular has been a huge issue. It is not an auto immune disease but usually accompanies people who have auto immune diseases is Fibromyalgia. I don't talk about this much, but recently my legs hurt so bad, how can I not. The muscles in my legs feel like I have ran a marathon, but literally I haven't gotten off the sofa. Even one of my dogs or cats sitting on my lap is so painful. I believe it was all set off by the surgery.

So looking ahead, I have to have bloodwork done, I also have an appointment on Thursday at John Hopkins University, a hand surgeon appointment at the end of October to find out when the next surgery will be. And in November a Rheumatologist and GP appointments on the same day. It seems like I am always going to a doctors appt. But trust me I don't want to go to any.

1 comment:

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam