Groundhog Day

Meredith’s rash has flared up all over – her feet and legs, butt, elbows.  Her joint pain has remained strong, her headache is still here (Lars has just bought a BP machine so we can test her at home).  Worst of all, the doctor called and her protein count in her urine has gone back up to where it was before she had the megadose 2 weeks ago.  As the doctor said to me on the phone “We aren’t holding her body back from attacking again.”.  I feel like I am in a nightmare.  We are essentially waiting for it to worsen before we go back to Egleston.  The doc said we can go tonight, or see if we can get through the night.  I just cannot believe this is happening.  Lars and I keep wondering if we are doing something wrong.  Is there some environmental problem in our house?  Mold or pests or some chemical?  I know it sounds crazy, but we are at a complete loss.  WHY does this keep happening over and over?  WHY?   WHY can’t they figure out how to fix this??  How far will this go?  If her urine protein count is this high again, it means her kidneys are probably experiencing the same kind of necrotization as before.  Will she have to have another biopsy?  Will she ultimately need a kidney transplant? (some HSP patients do, although I’ve read it’s only 1%).  When are we going to be back to normal?

I am praying that she will wake up tomorrow and feel better and her rash will be lessened and her joints won’t ache.  I am really praying for that, and ask you to pray for the same thing.  I just want my girl to be back to normal.

3 thoughts on “Groundhog Day

  1. I’m praying too. You truly are living a nightmare and my heart goes out to you. I am at a loss for new words of comfort for you, but I can pray that you’ll start to get relief from this stress soon.

  2. I can’t even imagine. You must be desperate for answers… Prayers going out to you.

  3. Beth,

    You, Lars, and Meredith have been in my thoughts and prayers. Merilee Hufnagel told us that Meredith was very ill. I can’t even imagine what you are going through. I am sending strength to you all and hope that things will get better and some what back to normal soon.

    Margot

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