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GREETINGS FROM LIZZIE VIA ROSEMARY

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Posted 10/18/2011 5:05 PM (GMT 0)
Hi All,

Lizzie said to say hi to all and that she regrets she is not yet able to post and support others in person but she thinks of you all. Right now is just too weak and still is having obstruction issues.

BUT, that she intends to get back with us, continues to work to get out of these health issues and would love to someday adopt and do some form of work related to her former health profession but with less physical demand.

At this point I am using my experience to tutor her through the record gathering process. She is working with some docs out there and I have made some general inquiries of some adhesion specialists for her. I have found a few and given her their names and some contact info.

I also just sent an email to Lahey who fixed me up the best that could be done and in general except for some ups and downs with certain foods, so far I have stayed out of out and out small bowel obstructions. With no identifying info due to privacy laws, I did not id her but gave a brief scenario of her past surgeries and asked if they would consider at least looking at her records. One of their specialties at Lahey is "difficult reoperations." Which hers and mine sure would qualify. All she needs is for the small bowel obstructions to stop and for the ileo stoma to pass waste so she can get nutrition. Then she has some abdominal pain also due to adhesions as did I before my lysis.

I am doing what I can and it means the world to me to be able to finally put what I went through and all I learned to use to help someone else. I sure hope something good comes of this for her and that I stay OK, but this is therapeutic for me and will hopefully help her.

Keep on praying and I will keep on networking on her behalf. I told her to enlist the help of others to do the foot work of all this record gathering as she is too weak understandably. She said it was fine if I gave an update to HW, and sent her love and support to all on here. so here it is. Rosemary
Posted 10/18/2011 11:29 PM (GMT 0)
Just an addition to the above update on Lizzie, also some low down ongoing pelvic pain issues I did not know of at time of my post.

She put in a "full work day" today gathering records and talking with her last adhesion doc consult, who unfortunately cannot directly help due to some unrelated business issues, but he spoke with her and is going to write up ALL results and recommendations as well as forward all of her records.

I remember doing all this on no food and it's NOT easy. Rosemary
Posted 10/19/2011 10:09 AM (GMT 0)
sweet Lizzie!!!! i miss her SO much!!! and i'm so worried about her! and i wish i could be with her!! is her pelvic pain is due to nerve damage? i pray she can finally go back to her life!! that is so kind of you, Rosemary, to try and help her with her situation. thanks so much for the update. i love you Lizzie!! always!!
Posted 10/19/2011 7:28 PM (GMT 0)
I'm trying and she's trying. Yesterday she accomplished soooo much and today a doc's appt. I suggested the patient advocate at mayo as they keep postponing. The patient advocate can get you either helped or at least answers. Even if it's a no, then at least you know to move on.

I am guessing her pelvic pain could be from the nerve damage from the removal of her rectum as I think it was removed. Her GYN thinks adhesions around her female parts. (I think), there is so much detail so I am qualifying by saying "I think."

Anyway, she sure is trying. I wish I could just find someone for her! There is this web site that is a patient advocacy site. There was this girl who, there is much evidence, had a sponge left in her during a surgery and she has been in misery since. The web site manager is wonderful and is actually going about in very legal means finding her someone to further diagnose, make a plan, remove the thing, and help the girl get her life back. What a wonderful thing that would be. I am thinking maybe that for Lizzie too? If worse comes to worse? I'm just brainstorming ideas here.

Rosemary
Posted 10/20/2011 12:55 AM (GMT 0)
Rosemary,

I spoke with Lizzie via text last week and she sounded so down. I'm so glad you're there to help her. I'm so sorry you've been through all that you have, but at least now there is some positive in it if you're able to help her. Please give her my love, and thanks to you!!

Janie
Posted 10/20/2011 2:21 AM (GMT 0)
Thanks Janie. So far my issues have just been food related so far anyway, then some new issue with a jaw nerve pain but am being eval'd for that. WRAP WOOD......that has quieted for the time being WOULD BE SO NICE if it just stayed quieted.

Anyway, I have learned sooooooo much through my trials I am glad to be able to help someone else. Her case is so much more complex than mine was but the principals are the same for navigating the medical world for help. I have told her that people on HW had been asking and I will remember you to her. Rosemary
Posted 10/20/2011 8:48 PM (GMT 0)
     I never had the pleasure of meeting Lizzie online but heard of her difficulties.   I keep you both in my prayers, Rosemary and Lizzie, as you both sure have had some tough obstacles to overcome.  God bless.
Posted 10/20/2011 11:45 PM (GMT 0)
Thanks Christine. Rosemary
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