I guess, I jinx myself when I said that thankfully I don't have any rashes (I opened my mouth a little to soon)...Now I'm eating my own words. I noticed some rashes on my decolletage area. It's not much but I still see them. I also noticed some rashes on my arms today. =[ I hope my rashes fade quickly and doesn't last for weeks. But knowing me that probably means that they will be here for awhile. I will now need to cover up or I can just put makeup on it (but it doesn't really help so what is the point). I don't want people to see my rashes and think what does she have? Is she contagious? Is she a freak? NO I am not contagious, my rashes will go away on its own and other people can't get it from touching me or coming in contact with me. The part that hurts the most is when friends or people that I thought were friends think that they can get sick from being in contact with me. They don't know it, but their act of ignorance hurts more than anything. How do you think I feel? It gets pretty lonely...I can't talk to anyone. Sometime I just need a friend, a should to vent on, or someone to just listen...
I use to think that they understand; however empathetic they may feel, they don't know what's its like living with an auto-immune disease (my own body attacking itself). My family don't even understand; so, how can I expect other people to understand? Sometimes I forget and think that my relatives know what SLE is until they say something like, "So you are so much better now right? You aren't sick anymore. You are young, so you heal faster." I feel so alone sometime. There are times when I feel like I'm not being heard. I can't talk to my family about my symptoms because they think that I am exaggerating and I can't talk to friends because they can't relate. This is the reason why I don't call my mom as often as she would like me to. I actually avoid calling her because I feel suffocated by her advice on how I should take care of myself (especially pertaining to alternative medicine)...I don't believe in mixing western and eastern medicine...The last time I did that it was not a good reaction. It landed me in the hospital...
I recently joined a lupus online support group. These people know what I go through daily and they actually understand my struggles. It's good being able to vent to others that understand where I am coming from. It's sad that my twin gets annoy with me at times and she thinks that I am faking my symptoms at times (I can be melodramatic at times) ahhahah...I am laughing now, but inside my heart is breaking...I usually don't tell them about my symptoms because I don't want it to seem like everything has to be about me, me, me.
I usually tell my relatives that lupus is sort of like diabetes. You can't get rid of it. Once you have it, you'll have it for the rest of your life. You have to take your meds or there will be major consequences...I would know cause I forgot to take my meds before and it was horrible.
I've been listening to Inna-hot, Cheryl Cole-parachute lately...I can't get them out of my head. Parachute has become one of my new favorite songs. The lyrics to this song is so absolutely sweet and the meaning to this song is lovely. Parachute was written by Ingrid Michaelson for Cheryl Cole. Ingrid Michaelson is also another singer. She plays the guitar so when she performs it is a little bit different. When Ingrid performs Parachute it does not sound right because she doesn't have the euro-pop sound to her voice. Cheryl does a better job of the song in my opinion.
xoxo,
Kat
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