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Bensmomjulie
Female, 49, Las Vegas, NV
"I thought I updated this an hour ago. My head is in the clouds, and they are dark rain clouds. Not a great day. had to just cry."
1:59am, August 28, 2009

  • About Me

    Image of Bensmomjulie

    Bensmomjulie

    Female, 49
    Las Vegas, NV, USA
    Member since October 9, 2007

    • About Me

      I am a stay at home mom/nurse caregiver. I have 6 children and 8 grandchildren. My youngest son, Benjamin, has Cystic Fibrosis. He's amazed everyone by living to be 18. He's always been sicker than the average patient.

      I am a stay at home mom/nurse caregiver. I have 6 children and 8 grandchildren. My youngest son, Benjamin, has Cystic Fibrosis. He's amazed everyone by living to be 18. He's always been sicker than the average patient.

    • Interests

      It might sound boring, but my main intersts right now revolve around my family. I don't have much time to pursue interests outside of family, and medical, but I have started an interest in beading (whenever I find the time)

      It might sound boring, but my main intersts right now revolve around my family. I don't have much time

  • Recent Activity

    • Sorry, there is no activity in the My Activity feed.

  • Journal

    • This entry is private

    • too much to handle

      Mood August 27, 2009 7:09pm

      June 15, I lost my baby, July 5, Ilost my daddy, and I don't sob until my brothers put me in charge of distributing incidental property in a not …

    • Breathing treatments

      Mood May 14, 2009 1:07pm

      When Benjamin was released from the hospital this time, Benjamin and Gene and I agreed that even though the docs said he only needed to do breathing …

    • The Miracle kid

      Mood April 23, 2009 8:44am

      Benjamin had a great night last night compared to the two previous nights. He was awakened every 4 hours for breathing treatments, and worked really …

    • This entry is private

    Read Journal

  • Hugbook

    Give Bensmomjulie a hug



    • Prayer

      From DDyer August 28

      I am so sorry that you are going thru all this. I am here if you need to talk.

    • Rainbow

      From dadsgirl1 August 28

      Thank you for your kind words of support

    • Sympathy

      From matthewsmom August 27

      so sorry for your loss. an anytime you need to talk or vent just let it out.

    • Hug

      From matthewsmom June 2

      Hope you are doing o.k., hope to here from you, anytime......candeda

    • Hug

      From matthewsmom May 2

      Thank You for takeing the time to give me a moment. It means so much. :)

    Read Hugbook

  • Photos

  • Goals

    Finish my living room

    Progress

    90 %

    Goal End Date is Jan 14, 08 681 days ago.

  • Support Groups

    • Close Cystic Fibrosis

      My 18 yr. old, Benjamin has CF. Diagnosed 8/23/89. He beat all odds and outlived doctor's who've given him a year to live. (11 years ago) The best medicine is having a reason to live. Something to look forward to. Through all of his struggles he forces us to have fun, and enjoy life. He's too thin for a lung transplant. He also has scoliosis and is too thin for the recommended surgery. He's a new Eagle scout.

      Treatments

      ADEKs Multivitamin Working / Worked
      They tell me they don't make them anymore, and now Benjamin has to take liquid because the capsules won't fit through his altered esophegus
      Chest Percussion Working / Worked
      It worked well for us except for the time it took. We quit when we got the ABI vest, and Benjamin doesn't want us to do CPT anymore.
      Cipro Working / Worked
      He's not on it now, but I think it helped when it was prescribed.
      Hypertonic Saline Working / Worked
      This was difficult to start, but we'd seen blogs, and told the doctor to start us out diluted. We started at 3%. Increased to 5% then to 7%. He couldn't take 7 so we dropped back to 5. He always coughs up alot with this, but recently he really hasn't wanted to use it because it is an irritant. It helped the most when we started using it in the new PARI eFlow electronic nebulizer. It scared us at first. He coughed up a chocolate brown colored mucus. Not like normal dried blood brown.
      Pancrelipase Working / Worked
      This of course for him has worked, but at one point a gastroenterologist who didn't know what she was doing overprescribed, and he got severe scarring in the intestines that most of the doctors won't even acknowledge occurred. Arrrgghh!!!
      Pulmozyme Working / Worked
      I think it works it seemed to help at first, now it just is a habit. no side effects noticed.
      ThAIRapy Vest Working / Worked
      It worked when he used it, but now he refuses. At first he didn't like it because he didn't get as much sit down one on one attention like he was used to when we were doing the CPT by hand. Most of his treatments he'd like someone to sit with him while he does them, but he doesn't want anyone outside the family to see it.
      TOBI Working / Worked
      We were using TOBI before it was approved by the FDA. Then the doctor put us on the trials. When it's used faithfully I'm sure it helps, but if he doesn't use it faithfully they say it adds to resistance problems. I'd rather he have Aerosol antibiotics right to the problem than internal either orally or IV. Side benefit he's 18 he won't brush his teeth, and he's never had a cavity. Wierd, Huh?

    • Close Scoliosis

      My son who's 18 has scoliosis. He's been recommended for surgery and he doesn't want it. When we first noticed the curve the other doctor said let's just watch it. He did nothing then he died. The new doc finally said maybe we should go see a specialist when it was bad enough for surgery. I wish we had done more research early on. He also has Cystic Fibrosis, and CF related diabetes.

    • Open Caregivers

      My 18 year old son has Cystic Fibrosis, CF related diabetes, and scoliosis. He's been recommended for 2 surgeries, but he doesn't qualify because he only weighs 85 lbs. see my profile for more. I'm always exhausted.

    • Open Dyslexia

      I am the mom of 6 adult children. I guess that makes me old. My 20 year old is dyslexic. He diagnosed himself while watching a talk show that was discussing dyslexia. He said, "hey that's what I do!!!" From that moment on he knew that we knew why he had trouble with his school work, even if we didn't understand anything else about it

      Treatments

      Prayer Working / Worked
      I have to say that when the school system failed us he survived this learning difference by shear answers to prayer. He is extremely shy, but he can read and function if he has access to technology to assist him.

    • Open Irritable Bowel Syndrome (IBS)

      I have 6 children. My husband adopted my first 3 and we had 3 more. I have one son with Dyslexia, and one with Cystic Fibrosis. I started feeling like I was going to die about 5 or 6 years ago. I finally went to a doctor who sent me to a specialist. At first I thought it was a hernia, because I'd had an umbilical hernia, and I had definite pain in one area after exertion, but the doctors didn't agree with me or eachother. One said I just needed to lose weight The other said it was IBS.

      Treatments

      Acidophilus Working / Worked
      always helps.
      Avoid Certain Foods / Chemicals Working / Worked
      This has been the biggest benefit to my IBS. I just wish the doctor would've been able to help me with this instead of finding out from my weight loss counselor! The best thing for me was avoiding raw fruits and veggies. Then I was able to bring most of them back. Mostly no iceberg or romaine lettuce, no celery, no cucumber, and no raw pineapple. OUCH1!!
      High Fiber Diet Working / Worked
      This is especially helpful when I'm trying to lose weight, and I have to eat more than I like to. (I know that sounds backwards, but it's true)
      Probiotics Working / Worked
      Lose Weight Working / Worked
      I think having a more ideal weigh made it easier to manage IBS, but it definately doesn't work all by itself.

    • Open Brain / CNS Tumors

      My mom has an inoperable brain tumor. Diagnosed 3 years ago it isn't growing, but her symptoms are worsening. She has trouble walking, but is in denial of it so she falls a lot.

      Treatments

      Gamma Knife Considering
      The surgeon said because of her tumor not growing he doesn't recommend this procedure as it probably would not reduce the symptoms.???
      Prayer Working / Worked
      This is huge. Sometimes it helps give comfort, sometimes you get answers about what to do to help treatment.

    • Open Kidney Stones

      My husband had a bad experience with kidney stones, and is very gun-shy of doctors, and he really needs to be checked regularly.

      Treatments

      Avoid Certain Foods / Chemicals Not Working
      I think he's got stones right now, and he's been putting off going in, but he can use it as an excuse for other things, I finally pressured him, and other circumstances fell into place to get him to make an appointment to go to the doctor.
      Surgery Somewhat Helpful
      by the time he admitted there was something wrong, he was in the ER waiting room vomiting his guts out. they sent him home with pain meds and a referral to a specialist. The specialist took one look at the MRI, and sent him straight to the Hospital for surgery. The doctor did it during his lunch break. When he went back a few days later for the follow up, they ripped something out, and my husband was bleeding more than I've ever seen blood in a toilet before. (I have 6 kids, I've seen blood)

    • Open Chronic Fatigue Syndrome

      I'm not sure if this is my problem, but the symptoms kind of fit, and it's one of those things a lot of doctors say doesn't exist.

      Treatments

      Sleep Somewhat Helpful
      Patience Somewhat Helpful

    • Open Immunizations

      I have 6 children, and 8 grandchildren. I am not impressed with the way vaccinations are monitored for safety.

    • Open Organ Transplants
      Types: Lung

      My son Benjamin has been recommended for a lung transplant, but he hasn't been approved to be on the list, or decided that he wants to yet.

    • Open Bereavement

      Treatments

      Crying Working / Worked
      holding it in only makes it build up inside.
      Grief Counseling Working / Worked
      You have to talk to someone, and he listens.
      Helping Others Working / Worked
      It makes you forget your own problems.
      Keeping Busy Working / Worked
      Prayer Working / Worked
      couldn't live without it.
      Remembering Working / Worked
      Talking Working / Worked
      Time Working / Worked

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