serand4

Just a tough day

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I have to admit that I'm getting tired of the progressive nature of this disease. Months ago it was all about the rash on my face and then the endless fact-finding mission to figure out what I'm dealing with. Now, several months later, many hospitalizations and doctors appts later, I wish I was just back to the red face! Forgive me for the rant, but here it comes...

I am so tired of being tired! For a couple of years it was just going back to bed in the morning after my son was fed and sent off to school. However, in the past month, I find myself just falling asleep sitting up at all times of the day! I'm guessing it's the new med, Cellcept, and hopefully my body will adapt to it. Good heavens, the last thing I need is more sleep!! I feel like I have deserted my child and my family. I very much need to get to the pharmacist for an antibiotic and we need groceries but I certainly don't want to drive right now. In addition to the fatigue, my skin is definitely changing. I have all these small purple circles and the coloring is so moddled. While I mentally realize that this is all just a matter of appearance, it's still very hard to take. I'm also down on my prednisone from 70mg to 40mg so I know that has a lot to do with how I feel and look. I'm taking it down very slowly but there is still the price to be paid of difficult breathing and fatigue. I'm just holding on to the fact that the Cellcept will continue to build up and help out.

My relationships are changing, too. My mom will barely speak to me anymore. She's not angry or blatantly rude, she just says whatever she's called about and pretty much hangs up. The last time we talked I had started to cough and she started to cry. She knows that when I got on the AI meds that my resistance goes down and my breathing gets difficult. Since I'm a mom, too, I know it has to hurt to have your child go through something like this. Selfishly, I wish she was just a bit stronger and could push me along instead of making me want to hide from her. But God gave her to me so there's something I need to learn or grow from in this situation.

Enough whining. I need to shower and get those antibiotics before my lungs get out of hand! Grrrr, I hate those things! As if my stomach isn't a nightmare enough! However, maybe they'll help me stop getting up in the middle of the night for food!
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