tag:blogger.com,1999:blog-4817612762341450075.post780310873450653162..comments2023-07-17T16:17:06.071+01:00Comments on A YANKEE IN QUEEN LIZ'S COURT: I know it's been a really long timePatricia Lessellhttp://www.blogger.com/profile/01747595273484731811noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4817612762341450075.post-62509105355402178342015-11-22T02:43:03.563+00:002015-11-22T02:43:03.563+00:00So very sorry to hear what a hard time you daughte...So very sorry to hear what a hard time you daughter is having. Prayers and gentle hugs from Texas.BillieBee (billiemick)https://www.blogger.com/profile/12962933031675452865noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-64052345064149889902015-11-09T08:33:31.374+00:002015-11-09T08:33:31.374+00:00Very sorry to hear about your daughters ill health...Very sorry to hear about your daughters ill health. You are both in my thoughts and prayers.Lyndseyhttps://www.blogger.com/profile/01984204149343024935noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-47722962888625655592015-11-02T18:06:59.411+00:002015-11-02T18:06:59.411+00:00My dear friend , i'm so sorry to hear about yo...My dear friend , i'm so sorry to hear about your youngeest daughter condition. I will keep her in my prayers as well as you. (((Love you)))Mayté Bermúdez-Garcíahttps://www.blogger.com/profile/09031486818730881428noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-44744144617552589802015-11-02T11:18:40.310+00:002015-11-02T11:18:40.310+00:00Sending love and prayers to you and your sister. �...Sending love and prayers to you and your sister. 💛Abbyhttps://www.blogger.com/profile/12893126547416817727noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-56518459326601349242015-10-30T22:40:07.011+00:002015-10-30T22:40:07.011+00:00Patti this may help you and it may not. My daughte...Patti this may help you and it may not. My daughter also has Crohns...a very aggressive form of it. We've been through much the same processes you have with Stacey: misdiagnoses, slow treatments, uncaring doctors, struggles to get primary care doctors, gastro doctors and surgeons to talk to one another and coordinate her care. She was on steroids for a short time and then put on Humera injections and a cancer drug that also helped control autoimmune diseases. She had bowel resections and, when the Humera suddenly quit being effective, she lost her whole large intestine and 2/3 of her small intestine. She now has 3 ostomy bags: one ileostomy and two to cover fistulas in her abdomen. She has to take supplemental nutrition through a PICC line in order to keep from starving to death and to balance the minerals in her blood stream. She is hospitalized again, as of last night, with pneumonia in several spots in her lungs, some fluid buildup around her lungs, elevated heart rate, lowered oxygen rate and they just discovered a heart murmur a few hours ago. She has a home health nurse who comes by every week to take blood samples and check the PICC line, and we're very thankful for that. She has to have blood transfusions several times a year, and is prone to infections requiring hospitalization a every 2-3 months. Her prayer is to be able to raise her children to adulthood (ages now are 16 & 13). I've told you this story NOT to solicit sympathy or to try to top your daughter's situation, but to let you know you're NOT ALONE in this. I understand about crying your eyes dry. I understand about being so sad you just can't do anything or get up enthusiasm for sewing or quilting or even getting out of the house sometimes. I understand about being so angry at the medical establishment sometimes that you could throttle someone. I understand about the months of daily treks to the hospital room, even changing the sheets, washing her hair, painting her toenails, helping her to the toilet, rubbing lotion into her skin, making pillow bolsters to keep her feet pointed up so she wouldn't get "drop foot", learning to change dressings and pack her abdominal wounds, flushing PICC lines and hanging nutrition bags. Your eyes have seen things you can't unsee and above all, your girl is suffering and You. Can't. Fix.It. Believe me, Patti, I get it. So here I am in the trenches with you. The heart trenches. The Mom trenches. The frustration, aching, helpless, angry, can't-wake-up-from-this-nightmare trenches. Just standing by in case you need a stabilizing arm under your elbow. I can't fix anything. But I can listen, share ideas...and pray. Grammasherihttps://www.blogger.com/profile/18020683094980707907noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-53332429965211864312015-10-30T07:02:13.159+00:002015-10-30T07:02:13.159+00:00Sending positive thoughts and many prayers for you...Sending positive thoughts and many prayers for your family in this time of illness. Dawnhttps://www.blogger.com/profile/02482461200177529420noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-2615752912689206932015-10-30T05:11:50.047+00:002015-10-30T05:11:50.047+00:00With all you have been going through these last mo...With all you have been going through these last months--months!!--I am glad you have found a good doctor, and Stacey is in a hospital in which she is receiving good care. I imagine she feels she is being seen as a person there--a person who has been very sick, but an individual--and that is huge, when she's been feeling so poorly. Now that they know what they are dealing with, there's hope. Incurable now doesn't mean 'abandon hope'.<br /><br />I always think of our friends who had a son born with cystic fibrosis in the early 1970's. When Brett was born, his parents were told not to expect him to live to enter grade school. Medical knowledge advanced more quickly than those doctors ever imagined, and we cheered as Brett graduated from high school, then college, then married, and became a father. So, what's true now won't always be true. (I have lupus, and I'm waiting out this beastly opponent, right along with you and the MS, but I'll gladly let Stacey go ahead in line and get her good news first. Please let her know I'm rooting for her.)Bethhttps://www.blogger.com/profile/11786511163919657885noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-53686623541314030352015-10-30T04:17:40.524+00:002015-10-30T04:17:40.524+00:00It's a pity you don't have a donate button...It's a pity you don't have a donate button! I'd most certainly donate to <br />this brilliant blog! I suppose for now i'll settle for book-marking and adding your RSS feed to my Google account.<br />I look forward to brand new updates and will share <br />this blog with my Facebook group. Chat soon!<br /><br />my web-site - <a href="http://aik.blog.Eurosport.fr/2012/10/08/noll/" rel="nofollow">business Information systems career Opportunities</a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-60960837198020410822015-10-30T02:56:22.813+00:002015-10-30T02:56:22.813+00:00You have all had a really terrible time, but I am ...You have all had a really terrible time, but I am so glad that she finally got some decent care. Take care of yourself too, Patty. Blogging can always come later.Needled Momhttps://www.blogger.com/profile/07749314475716010490noreply@blogger.comtag:blogger.com,1999:blog-4817612762341450075.post-24576963949587121852015-10-30T01:12:23.828+00:002015-10-30T01:12:23.828+00:00Oh Patti, I'm so so sorry to hear about your d...Oh Patti, I'm so so sorry to hear about your daughter's illness. I'm sending lots of good thoughts and prayers for you all. And lots of hugs too. Sometimes the medical community can be such idiots. And sometimes they can be wonderful. I hope you get lots of wonderful from now on.Margarethttps://www.blogger.com/profile/03646028248366805686noreply@blogger.com