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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Tuesday, July 21, 2009


So today I went in for my IV therapy. My doctor told me yesterday I would be fine to go in, although in truth I was not sure. So I did as my doctor advised and went in. They couldn't treat me. They sent me away. Apparently the Frederick Memorial Hospital infectious disease control says I need to be in isolation!

"Before the blisters are crusted over, the virus can be spread to anyone who does not have immunity to chickenpox through vaccination or previous infection. " (http://www.medicinenet.com/shingles-rash/article.htm)

All of my blisters are dried up and scabbed over. They are not oozing, it is covered up on my back and under my arm...out of sight... But the nurses have to do what the FMH infectious disease people say. No matter how dumb. Oh and no one even looked at the rash. Not a soul, so I'm not sure why the conclusion could be made that I would need to be in isolation. But whatever...

They did not give me the name of who it was that said I need isolation. So they sent me to my Dr's office. I go in and my dr is not even there! So I sat and waited...and waited...and then my dr came in and said she would see me. HUH? Just admit me so I can get the IV's!

I'm totally freaked out about what she said yesterday about my immune system. About being at a higher risk for certain things...so why would they make me wait? I'm so upset right now and my pain meds just don't seem to be helping much.

So she says she'll see me. FINE. So I wait and wait....and wait and wait....finally I wrote her a note apologizing for being a problem. I just asked her to call me today and tell me what to do. I would like to be admited so that I can get my IV's as they are uber important right now.
But right now I get the feeling they'll just tell me to rest at home for 2 weeks!!

My doctor always uses the analogy of a car and gas. She says I am the car and right now I'm on E, just barely hanging in. If your car runs on E constantly eventually it starts to cause damage.
The vitamins, minerals and lipids are the gas and it just goes out just as quickly as they put it in.

So what happens when I run out of gas completely?


  1. I am guessing at this point you have not heard from your doctor yet? Your doctor is going to do everything that she can to keep that from happening. Hopefully they will be able to figure out why you are not absorbing the things you are not so they can fix that problem!!

    Let me know if there is anything we can do!!

  2. I totally freaked out on my mom today and made her cry. She hates it when I cry...
    I just feel; some days, that life is against me. That might not make sense but it is days like this that really shake my faith.
    It is 5:10 and I still haven't heard anything yet. I'm doubtful that I will hear anything today. This is why I think I'm a whiner...because if it were that important my doctor would call. heh...

    Thanks Ann, I appreciate you. I really do.

  3. I can imagine that it did really freak out your mom.

    It makes total sense. You are human and you deal with so much every day. I am sure there are times that it is so hard not to feel as though life is against you.

    You are not a whiner!!!!!!!

    You are welcome!! I so wish that there was more that I could do!