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  1. ((((((Lostparent)))))) ~ You named at least a...

    ((((((Lostparent)))))) ~

    You named at least a half dozen medical professionals, who disagree with your son's neurologist. You have our opinion, which disagrees with your son's neurologist. You...
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    Today's Appointment

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    It sounds like J is receiving good care, and all the needed tests are being done. That is good news.

    Aww… thank you for saying that you miss...
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    ((((((Hugs to All)))))) ~ 5312 After the...

    ((((((Hugs to All)))))) ~


    5312
    After the Hike Up and Down Hill



    funnylegs4 ~
  4. ((((((Pete1)))))) ~ You're welcome. We're all...

    ((((((Pete1)))))) ~

    You're welcome. We're all happy to provide you with support and our thoughts. It is why we are here.

    When is your doctor's appointment?

    Love & Light,

    *heart
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    ((((((funnylegs4)))))) ~ Your friend, J, is in...

    ((((((funnylegs4)))))) ~

    Your friend, J, is in my prayers, as are you. I pray that she doesn't have cancer.

    A dear friend of ours had uterine and stomach cancer, and she's been cancer free...
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    ((((((Donna)))))) ~ How I would love to be a...

    ((((((Donna)))))) ~

    How I would love to be a Lake Lady! However, I probably wouldn't be able to tolerate 2 degrees above freezing! I'd be in the cottage, directly in front of the fire place,...
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    ((((((Hugs to All)))))) ~ nuthatch ~ Tula...

    ((((((Hugs to All)))))) ~

    nuthatch ~

    Tula is a jewel! She is exuberant with joy. Such a great adventure for her, and so many wonderful learning experiences, which she will carry throughout...
  8. ((((((Lazarus)))))) ~ Did the urgent care doc...

    ((((((Lazarus)))))) ~

    Did the urgent care doc suggest anything to reduce the pain in your head, like a cold pack for 20 minutes, or Tylenol or Advil?

    If you decide to use honey on your wound,...
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    ((((((Hugs to All)))))) ~ Virginia, Jeanie,...

    ((((((Hugs to All)))))) ~

    Virginia, Jeanie, Sunshine and all who may be affected by the storm, our prayers are with you. May you be safe, undamaged, and power-full.

    Love & Light,

    *heart
    ...
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    ((((((Virginia)))))) ~ You need to tell...

    ((((((Virginia)))))) ~

    You need to tell Instacart that your goods were damaged and get a refund on your bananas and eggs. Your shopper needs to be aware that he didn't do his job, and so does...
  11. ((((((Lazarus)))))) ~ If you have Witch Hazel,...

    ((((((Lazarus)))))) ~

    If you have Witch Hazel, I recommend that you soak a paper towel with it, then apply it to your bruises. You can put some plastic wrap over the paper towel and adhere with...
  12. ((((((Pete1)))))) ~ *Welcome TO BRAINTALK! ...

    ((((((Pete1)))))) ~

    *Welcome TO BRAINTALK!

    I'm glad that you found us, but I'm not sure whether any of us can help you to define what might be causing these pin pricks.

    Sometimes we have...
  13. ((((((Lazarus)))))) ~ Start thinking of clever...

    ((((((Lazarus)))))) ~

    Start thinking of clever responses to the question, "What happened to your head?"

    How about, "This? Oh, that's nothing. You should see the deer!"

    Or, "I should have...
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    Good News!

    ((((((Hugs to All)))))) ~

    Peritoneal Fluid Pathology:

    No cancer in the fluid.

    *smile YAY! *smile

    Jim has been quite tired today. He didn't take his Lasix last night, because it was so...
  15. ((((((Lazarus)))))) ~ Ouch! I'm sure that was...

    ((((((Lazarus)))))) ~

    Ouch! I'm sure that was frightening. I'm thankful that you were treated quickly and able to have safe transportation. I hope the doctor also ruled out a concussion. ...
  16. ((((((Lostparent)))))) ~ Your wife being of...

    ((((((Lostparent)))))) ~

    Your wife being of the verge of telling off your son's neuro is a sure sign that you need to find another neuro. And you may have to go through a bunch of them to find...
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    Jim's Gut Drainage Adventure

    ((((((Hugs to All)))))) ~

    John arrived early today, brought in the box of oranges, showed us how to use the wireless headphones with our iPad, and carried the satchel of necessary items (briefs,...
  18. ((((((Lostparent)))))) ~ Behavior related? I...

    ((((((Lostparent)))))) ~

    Behavior related? I strongly doubt this conclusion, having witnessed thousands of seizures with my children. I'm not exaggerating that number, unfortunately. Michael's...
  19. ((((((Hugs to All)))))) ~ tic chick and...

    ((((((Hugs to All)))))) ~

    tic chick and funnylegs4 ~

    Thank you for mentioning photosensitive seizures. Both of my boys experienced them periodically, so we were very careful about what they...
  20. ((((((Lostparent)))))) First, never allow a...

    ((((((Lostparent))))))

    First, never allow a label to be attached to your son for the sake of the system’s convenience. If your son does not have a diagnosis of DD, no one can just label him as...
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    Appointments, Car, and Other Stuff

    ((((((Hugs to All)))))) ~

    Our home has a bakery aroma this afternoon. I turned 4 over ripe bananas into muffins with walnuts and blueberries. I decided since we have a ton of last night's...
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    ((((((Hugs to All)))))) ~ agate ~ Wow,...

    ((((((Hugs to All)))))) ~

    agate ~

    Wow, that is a lot of strenuous work. I hope you aren't aching anywhere from all that you did. What is the dress code? Do you have to wear a formal with a...
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    ((((((Donna)))))) ~ Please do not apologize to...

    ((((((Donna)))))) ~

    Please do not apologize to me for having a respite at your cottage. It's wonderful that you don't have internet access. You're there to rest and revel in the peace and glory...
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    ((((((Mary Grace & Kathleen)))))) ~ What great...

    ((((((Mary Grace & Kathleen)))))) ~

    What great photos! Kathleen is pure JOY, and she loves her life, that is so obvious in her radiant smile. I couldn't be more thrilled that she is happy and...
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    ((((((Hugs to All)))))) ~ agate~ Thank you...

    ((((((Hugs to All)))))) ~

    agate~

    Thank you for sharing Ralph's message. My heart goes out to Ralph, as 3 weeks is like just a minute ago, especially after a lifetime together. And even though...
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    Blood Test Results

    ((((((Hugs to All)))))) ~

    When I finished my last post, I checked our email. I saw the notice for a health update on Jim's portal. Took a few deep breaths and logged in.

    The results show...
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    ((((((Mary Grace)))))) ~ It's always wonderful...

    ((((((Mary Grace)))))) ~

    It's always wonderful to see a post from you. I pray that all is going well for you, Kathleen and your family. Are the leaves turning and the weather cooling?

    I...
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    ((((((Hugs to All)))))) ~ I just spoke to a...

    ((((((Hugs to All)))))) ~

    I just spoke to a very nice Spectrum tech, and as we were speaking, by magic, the internet connection came on! She didn't do anything!

    She said that our cables...
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    Hugs to all On iPad, lost internet connection ...

    Hugs to all

    On iPad, lost internet connection on computer. Modem lights are green except the last light, which is off.

    Nancy here today to draw blood. Jim peed a lot of blood while she was...
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    ((((((Virginia)))))) ~ You're so right. My...

    ((((((Virginia)))))) ~

    You're so right. My emotions are scattered everywhere. I'm trying to remain balanced, but thoughts, memories, fears, worry all interfere constantly.

    Jim's appointment...
  31. ((((((Lostparent)))))) ~ Seizure activity may...

    ((((((Lostparent)))))) ~

    Seizure activity may not show up on an EEG, if seizures are not occurring during the test. If no seizure activity is noted with this EEG, you may want to ask your neuro...
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    Blood in the Stool

    ((((((Hugs to All)))))) ~

    The result of Jim's fecal occult blood test was posted on his portal today. Positive. Blood in the stool.

    Dr. K's note: some blood found; a GI consult, when he is...
  33. ((((((Lostparent)))))) ~ One other note, I...

    ((((((Lostparent)))))) ~

    One other note, I forgot. I noticed Evan is wearing an Ohio State t-shirt. If you are near The Ohio State University, I highly recommend that you contact Nisonger...
  34. ((((((Lostparent)))))) ~ I apologize for not...

    ((((((Lostparent)))))) ~

    I apologize for not posting again sooner. Funnylegs4 is giving you excellent guidance. You're in good hands with funnylegs4. *wink

    I watched the video of your son...
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    ((((((Jeanie)))))) ~ Thank you for your...

    ((((((Jeanie)))))) ~

    Thank you for your prayers, and you know you are in our prayers too.

    I couldn't agree more with you that Jonathan and Michael are lifting up both Jim and me. I know that...
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    Today's Radiation Appointment

    ((((((Hugs to All)))))) ~

    Thank you Virginia and ANN!

    Well, what I’ve learned so far on the iPad is that I much prefer an actual keyboard. Using the stylus was awkward, and the iPad keyboard...
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    ((((((hugs to all)))))) I’m attempting write...

    ((((((hugs to all))))))

    I’m attempting write this while waiting for Jim’s simulation to be started, using the iPad. I decided to sit in the large lobby at a table near snack machines. Too stuffy...
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    Baking Soda Bath for Veggies & Fruits

    ((((((Hugs to All)))))) ~

    ((((((CAT)))))) ~

    *forgetmenot

    Jim's low WBC has made me extra nervous about washing veggies and fruits to remove pesticides and germs. I tried a vinegar wash with...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for your suggestions.

    It's hard to have a routine, beyond what we currently have, when Jim is up numerous times at night peeing, and only...
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    ((((((Hugs to All)))))) ~ Thank you,...

    ((((((Hugs to All)))))) ~

    Thank you, funnylegs4. I'm so glad you had a nice vacation. It's wonderful to welcome you home.

    NANCY'S VISIT

    Although Dr. K said to us that Jim could have a...
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    Radiation Oncologist Consult Results

    ((((((Hugs to All)))))) ~

    Thankfully, Jim felt much less pain today, after taking a Tylenol with Codeine at midnight. He took another one at 1:00 p.m. prior to the appointment to keep the pain at...
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    ((((((Hugs to All)))))) ~ tic chick ~ Thank...

    ((((((Hugs to All)))))) ~

    tic chick ~

    Thank you. That was lovely.

    Jim and I both strongly feel that Jonathan knew how ill Jim is and that he would need intense care from me. Within 14...
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    ((((((callyflower)))))) ~ Thank you so much. ...

    ((((((callyflower)))))) ~

    Thank you so much.

    My Corolla had a severe oil leak thanks to a lousy lube/tune shop. I needed a new engine. But she served me well for many years. And my cousin's...
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    Radiation Oncologist Appointment Tomorrow 10/2

    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you for sharing your experience with managing your husband's pain. Jim and I discussed this today, and he agreed that he shouldn't wait until the...
  45. ((((((Hugs to All)))))) ~ Sunshine ~ I...

    ((((((Hugs to All)))))) ~

    Sunshine ~

    I recommend using nitrile gloves (or latex, if you're not allergic) to apply the Bag Balm. You might also try applying it at night before bedtime,...
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    ((((((Hugs to All)))))) ~ callyflower ~ I...

    ((((((Hugs to All)))))) ~

    callyflower ~

    I did text Nancy and asked her to call me, which she did this afternoon, while I was taking care of Jim, so I missed her call. I returned her call...
  47. ((((((Lostparent)))))) ~ *Welcome I'm glad...

    ((((((Lostparent)))))) ~

    *Welcome

    I'm glad that you found us, but I'm so sorry that your son has these complex issues. It is extremely overwhelming to seek answers for your child and feel as...
  48. ((((((Sunshine)))))) ~ So glad you're using...

    ((((((Sunshine)))))) ~

    So glad you're using Bag Balm. It is good stuff. Yes, a thin layer is usually sufficient. If it's healing cracks in your fingers, then you're probably using the right...
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    ((((((Hugs to All)))))) ~ agate ~ Yes,...

    ((((((Hugs to All)))))) ~

    agate ~

    Yes, Jim's first oncologist predicted he had 3-6 months in 2017. She gave him one dose of Opdivo, and it cut the tumor in half. Then, she refused to give him...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Excellent point about removing blood too often. I'm used to being in ICU, where they took Jonathan's blood every day. One stay was 40 days, one was 45...
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    5299 HAPPY ANNIVERSARY ANN & PETER ~ May...

    5299

    HAPPY ANNIVERSARY ANN & PETER ~

    May your love grow stronger everyday.

    Love & Light,

    *heart
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    ((((((callyflower)))))) ~ Thank you so much. ...

    ((((((callyflower)))))) ~

    Thank you so much.

    First, I didn't mention that Jim has colon problems, but Dr. K didn't want to put Jim through a colonoscopy. He sent us home with an occult blood...
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    ((((((Hugs to All)))))) ~ SuzE-Q ~ Thank...

    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Thank you so much for your support. It is a lot to take in. Here's how today went:


    This morning Jim’s shoulder/back pain was worse than it has been. ...
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    Ct scan results

    ((((((Hugs to All)))))) ~

    Okay. The results are in. Here they are:

    Lung Mass: Increase from 5 CM to 6 CM. 6 CM is 2.35 inches.

    Bladder: A new 10 mm (.04") intraluminal (inside a tube)...
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    ((((((Hugs to All)))))) ~ Tamie ~ Thank you...

    ((((((Hugs to All)))))) ~

    Tamie ~

    Thank you for this information. I know about RSO, but I haven't read anything about bovine colostrum. I went to the Slone Kettering site, but I couldn't find...
  56. ((((((Linda)))))) ~ How did John's check up go...

    ((((((Linda)))))) ~

    How did John's check up go today? I was thinking of and praying for both of you. Do you have market on Saturday? I hope you're finding time to rest.

    Love & Light,
    ...
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    ((((((Steve)))))) ~ I agree with funnylegs4...

    ((((((Steve)))))) ~

    I agree with funnylegs4 that you should have a glucose monitor at home. Check with your pharmacist for a recommendation for the best kind for you.

    You might want to try...
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    ((((((HUgs to All)))))) ~ Donna ~ Thank you...

    ((((((HUgs to All)))))) ~

    Donna ~

    Thank you for the iPad suggestion. I will ask John to do that for us. Jim is getting the swiping thing pretty well now, and he's better with the stylus. We...
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    ((((((Hugs to All)))))) ~ callyflower ~ I...

    ((((((Hugs to All)))))) ~

    callyflower ~

    I hear you. We'll probably talk with Dr. K about attempting to wean Jim down to 5 mg/day from 10 mg/day. We discussed this at our May visit with Dr. K,...
  60. ((((((Sunshine)))))) ~ Here's an article by a...

    ((((((Sunshine)))))) ~

    Here's an article by a dermatologist about the differences between Udder Cream and Bag Balm. Jon's nurse is a big proponent of Bag Balm over Udder Cream.
    ...
  61. ((((((Sunshine)))))) ~ Jonathan had many...

    ((((((Sunshine)))))) ~

    Jonathan had many severe wounds on his rear end for 14 years.

    First, I suggest that you find a PT, who is an expert in wheelchair seating. Roho cushions have to be...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for the information. Dr. K did mention gastritis with steroids, but he also mentioned GERD. I guess he thinks Jim ups his steroids...
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    ((((((Jeanie)))))) ~ Welcome Back! *smile So...

    ((((((Jeanie)))))) ~

    Welcome Back! *smile So glad you didn't have any traveling problems, other getting lost and the restaurant being moved.

    Thirty-five is a good turnout. I am happy for you...
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    ((((((Hugs to All)))))) ~ Virginia ~ I...

    ((((((Hugs to All)))))) ~

    Virginia ~

    I found this, which explains Detruser-Extruser Dyssenergia :

    http://www.drgarysmultiplesclerosiscure.org/Blog/detrusor-sphincter-dyssynergia.html
    ...
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    Adverse Reaction To Nexium?

    ((((((Hugs to All)))))) ~

    callyflower ~

    We took your advice today, and Jim had one Nexium. He took it an hour before lunch, which is what the warning on the bottle states, instead of a half...
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    ((((((Hugs to All)))))) ~ agate ~ Thank you...

    ((((((Hugs to All)))))) ~

    agate ~

    Thank you for sharing that story. Right now, I can imagine Cat and Peg together laughing about that moment, while exchanging recipes.

    Happy Birthday, Peg...
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    ((((((Hugs to All)))))) ~ nuthatch ~ I've...

    ((((((Hugs to All)))))) ~

    nuthatch ~

    I've been thinking about Jeanie too and praying for safe travels for her. I hope she is having a wonderful time and every moment is worth all that she...
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    Meds, iPads, Driving, and Blood Pressure

    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you so much for this warning and for the link. Are there any other options, besides Nexium?

    It perturbs me that Dr. K disregards the cautions for...
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    Iron Infusion Day 2

    ((((((Hugs to All)))))) ~

    Thank you Virginia and SuzE-Q ~

    I will definitely give positive feedback praising the infusion center. When things are bad, I complain, and when they’re good, I...
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    ((((((Jeanie)))))) ~ Our prayers are with you...

    ((((((Jeanie)))))) ~

    Our prayers are with you all the way there and back home again. May it be smooth sailing, and may you find joy in your reunions with your friends and your family.

    I will...
  71. ((((((Linda)))))) ~ It seems that medical care...

    ((((((Linda)))))) ~

    It seems that medical care these days is "treat 'em and street 'em." This is what happened to Jim in April. He'd been admitted via ER near death, and 40 hours later, he was...
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    ((((((Hugs to All)))))) ~ agate ~ Thank you...

    ((((((Hugs to All)))))) ~

    agate ~

    Thank you so much for posting this message from Cat's husband. Your response to him is lovely. I hope that he is comforted in knowing how much we all love...
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    ((((((Hugs to All)))))) ~ Jim’s infusion went...

    ((((((Hugs to All)))))) ~

    Jim’s infusion went very smoothly today.

    The medical center has wheelchairs, which are just basic frames with wheels and no seat belt, lined up outside the building,...
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    ((((((Hugs to All)))))) ~ Parsi ~ I'm so...

    ((((((Hugs to All)))))) ~

    Parsi ~

    I'm so very sorry for your loss.

    It is comforting to know that Cat was in Hospice care, and I pray that she felt no pain and passed peacefully.

    We're...
  75. ((((((Linda)))))) ~ Any news on John? ...

    ((((((Linda)))))) ~

    Any news on John?

    Prayers continuing ~

    Love & Light,

    *heart
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