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gcpommom

My DD is very sick

gcpommom
15 years ago

She has always suffered from chronic pain of endometriosis since she was a teenager. But now, she is so sick, doctors are not able to help much; no one seems to know what is wrong or what to do.


She became unable to keep any food down since last Oct., and has gone from weighing 115 to 80 lbs. She is given nutrition through a line in her artery, which is dangerous in itself. She's been in the hospital 4 times this year with severe blood infections, has had transfusions, etc. It was all so sudden, and so scary and I feel so helpless. She is only 21, and lives at home with us. She's just so tiny and frail.

I started mosaicing around the time she got sick. This was a surprise to everyone, including me, because I have never considered myself to be artistic. However, I have found this new hobby to be very soothing, sort of gives me a break from the sadness around me. Seeing all the beautiful things created by the women on this website brings a lot of joy to my life. Although I may not always have time to mosaic, or to post, I have found a lot of comfort coming here, and in knowing that there are so many kind, helpful people out there in the world.

My daughter is very supportive of my mosaicing. If I ever get good enough to sell some of my pieces, I already know what I will call my mosaic company: Juwlz and Me Mosaics. That's her nickname, her name is Julia. And the "me" (M.E.) are my younger daughter's initials. Not that it will ever happen, but she was thrilled with the idea.

Anyway, thanks for listening.

Judy

Comments (12)

  • flagtruck
    15 years ago

    My prayers are with you daughter, you and your family. I hope that she rallies and gets better soon. It sounds like you are a very busy Mom? In what part of the country do you live? There are a lot of us in TX and then from can to caint...This is one of the most caring forums I have ever been associated with. You will find lots of help here and a lot of happiness. Good luck with your art and your daughters. They sound like they are very supportive or you and your talent.

  • sunnyca_gw
    15 years ago

    Sorry to hear about your daughter. You said drs. So sounds like more than 1 but are they all at same clinic or hospital, thinking 2nd opinion might be in order. Could she have celiac disease- allergic to wheat gluten, which they are putting in lots of foods now. My niece was 18 when she found out she had celiac, she was already on insulin pump so it is hard. Celiac is greatly increasing in US as I looked it up on Internet. Causes you to feel lousy, diarrhea, stomachaches & weight loss. She was in LOs Angles area at time so they found it fast. I would ask the drs if they have tested her for it. Better to have to be on crazy diet than to go downhill. Can't they operate,SIL had surgery on her's. Anyway hope I'm not butting in, I just know how sick Kimmie was & now she is doing so much better. Lot of very caring people on this forum. I'm sure many will be here for you. Jan

  • gcpommom
    Original Author
    15 years ago

    Thank you both. She has a team of doctors at the University of Michigan Hospital. U of M is supposed to be the best in gasterology, but they are so slow. We have talked to other docs/hospitals for opinion, but they wouldn't take her as a patient, just send us back to UofM, since they are the 'best equipped' to handle Julia's situation.
    She doesn't have celiac, have looked into that before. Her digestive system has stopped working--motility problems.
    They just started her with an Eating Disorder doctor, he is really nice, we've seen him just once so far. So far he is the only one who says "we can fix this", so I can't wait til we see him again. He is supposed to teach her 'refeeding' techniques, try to get her body to accept food again.

  • sunnyca_gw
    15 years ago

    Glad to hear that a dr. is taking interest. That is what you need!!So many now just see you as another patient. If she were my daughter tho I would still look up Best drs for gastrointestinal disorders on Internet & if you find 1 that sounds like he is excellent ask the new dr. if he would be willing to contact that dr. Or bypass drshe has & email or write this specialist & see if he would take an interest or work with her dr. Worth a try. Dr. in Montana worked with UCLA for relative's brain tumor, he got 6 yrs more of pretty good life than they said he would. I once called UCLA to ask cardiologist a question no one would answer for me. To my surprise the head 1 came on the line & told me the answer. So some are in it for the patients, if you get a "no" just try something else. The new dr. is kind I like. I have serious allergies & found 1 like that & he told me "never give up" new things are being found all the time, there is always hope!!! Prayers & hoping things turn around soon. Jan

  • nanatricia
    15 years ago

    I do not have any thing to add except I am praying for her.

  • shrty411
    15 years ago

    Oh you ARE in good hands at U of M!! My son was there ( more info on that if you click on my page). Those are some of the most caring people in the world..not just the brightest and best!! Though I have to say, I did think those gastro Drs a bit strange.

    I hope this new Doc is on to something!!

  • curbdiver1954
    15 years ago

    Hugs and prayers from here as well! Can only imagine what you all are going thru....will definitely be praying for more good news from the dr very, very soon!!

    Pat

  • rchovey
    15 years ago

    Prayers are going up for Julia and for you.

    Blessings
    Ramona (rchovey)

  • lovemosaics
    15 years ago

    My prayers and thoughts are with you too. So very sorry
    you are going through this situation. I's so hard to watch our children in pain.

  • gcpommom
    Original Author
    15 years ago

    Thank you all so so much. On a good note, she had an appt with her gastro doctor. They found some problems in her last tests (it is sad when you are happy that they found something, but it is so much better than knowing nothing!)

    So, she may need surgery, and they are starting her on biofeedback to try to get her bowels working again. Not quite sure what biofeedback does, but it is a kind of physical therapy.

    So, we keep our fingers crossed that slowly...very slowly, she may get through this and be able to eat again.

    Thanks again, it means a lot to us to have support.

    Judy

  • Calamity_J
    15 years ago

    Prayers are being said!! Take care of yourself too thru all this, and I love the name of your mosaic business!!! God Bless!!! Jane

  • texaswild
    15 years ago

    Bless you - prayers here too.

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