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Thread: Kate's On Line Journal

  1. #131
    Good evening all

    Just wonder how many chat rooms where people get together in this group there are. Also what days and what times do people get together. If there are any other dwarves in this community, I'd appreciate hearing from you. Since joining this community, I've gained knowledge and strength to get through this SCI challenge. I have found that the SCI is harder then the dwarfism.

    Glad to have a place to come. My email is mr.pockets@verizon.net, looking fdorward to future conversations.

    David

  2. #132
    Back home again...

    What a week! Going back to MI from WVa is a ten hour drive, if the weather is good...which it was, BOTH WAYS!! What a miracle that was. Brianna and I stayed with my folks and saw both my brothers and their families. My youngest brother has one boy, seven months old. What a cutie!! He is the sweetest baby in the world (ok..so I may be biased...) My other nephew is 9 and I got to see one of his hockey games..he's super, playing a league above his age level. I took my mother, Brianna, and my niece Kayleigh to see "Phantom of the Opera" which was fantastic. And poor Brianna had dental work done, which was the whole reason for the week back in Michigan. Here's this girl, 22 years old, never had a cavity in her life...and all of a sudden she has decay in just about every tooth! The dentist thinks it's a combination of her meds and diet; her enamel is falling off. And to make things even more interesting, back in July of 2000 she went to have her wisdom teeth pulled, and had a toxic reaction to the lidocaine. She had to be air-lifted to the hospital (Her second MedFlight ride...and let's hope it's her last!) So...all this dental work, and no "caines". Our dentist has the new spiffy laser to do fillings, but it's not exactly pain-free.

    Anyway...we're home until Sunday, when we fly out to Craig Hospital again. Bri will begin her two-week stay there; I get to fly her out, and then come right back home, because she's nervous about flying alone...but doesn't need me once she's there. She's promised to fly back home on her own, though. Whew!

    As to descending on Martha..I wasn't really serious, Martha..don't worry! You DO need to get away. And I'd go with the pale green; you can always use the bright emerald green for the accessories.

    Jackie..if I didn't say so before, thanks for the endorsement of the Subaru Forester! I'm going car hunting this week...especially after getting my poor little Ford Escort stuck in the drive coming home Friday!! Grrr....

    Vicky

  3. #133
    To MrPockets,

    I'm going to copy your post over to the "Life" forum, and start a new topic with it. I think you'll get more responses there to your question. We don't have any specific 'chat times', but a lot of activity in our own chat room occurs in the evening hours.

    Jackie

    _____________
    Tough times don't last - tough people do.

  4. #134
    Yikes, Vicki - What a way to find out about a 'caine' reaction! Matt's teeth also needed major work, which he's just completed. Someone told us it was the Dilantin (which he's no longer on), and the combo of Ditropan and oral Baclofen (he has a pump now, so no oral Baclofen). The Dilantin actually affects the teeth, and the Ditropan and Baclofen interfere with saliva production.

    Matt had an experience at the dentist, too; the dentist was putting in the liner piece for the cap, dropped it and it hit the back of Matt's tongue, whereupon he swallowed it! The dentist totally freaked out and called EMS, and Matt was taken to the ER. I wasn't there, just Matt and his aide. They took some x-rays, and the cap was in the stomach, not the airway, so there was a big sigh of relief! Then the GI guy came down and looked at it, talked to the dentist on the phone, and they decided that because the cap liner was metal and had sharp edges, Matt needed to have an endoscopy to get it out!!!!

    You certainly lucked out with driving weather! With the way this winter has been all over the country, you must have just dodged weather systems all over!

    Our remaining cat, Puff, has been going through some interesting changes since we lost Bif last week. (We also lost our 3rd cat, Sashi, about 9 months ago, to old age also) Seems that now he's the only cat in the house, he's being especially 'cute and cuddly'; maybe he thinks, gee I better stay on my toes, or they'll get rid of me, too! This 16 year old cat is acting like a kitten, doing all the kitten things; and he even actually sat in front of the TV and WATCHED, for about a half hour the other day! He's been especially endearing to hubbie, who's taking Bif's passing pretty hard. It's taken the edge off his grief a little - almost as if the cat knows!

    Well, I have an entirely too big list of things to accomplish today, so ta for now, all. Jackie

    _____________
    Tough times don't last - tough people do.

  5. #135
    Senior Member martha's Avatar
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    Once again you wise ladies have opened my eyes! Julian has had to have 3 (or is it 4?) caps in the last six months (can you say OUCH to the budget not covered by insurance!) but we never considered it could be due to the meds. Guess we never questioned the cause at all as we go through this SCI life in a daze.

  6. #136
    Senior Member martha's Avatar
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    Vicky -- Forgot to say welcome back! We missed you. But then you're probably already gone again.

  7. #137
    Thanks, Martha...it's GOOD to be home. And yes, I wouldn't be surprised if your husband's dental work was the result of his meds...just another bright little perk of SCI, eh? Brianna had all her front teeth, top and bottom, worked on. Her back teeth still need to be done, and will probably require testing to see if she's allergic to lidocaine, or just had a toxic reaction to it. As you can imagine, it's been hard finding people willing to test her..not to mention OUR nervousness. Last time she spent a week in ICU on a ventilator. It affected her heart; it was only functioning at about 10% capacity. (We learned that people with this level of heart function are transplant candidates). Can you imagine? All I could think of was, "She endured this car accident, SCI, spinal infections, a second car accident, the mother of all blood clots...and now, it's gonna be her teeth that do her in!" What a nightmare. Thank God she was young, and the heart function gradually reversed itself and came back to normal. Anyway, I do have a connection at Univ. of Mich. who is willing to work with us, which will probably work out to be the same time everyone else is whitewater rafting, or running around Chicago, or whatever we decide on! Oh well...one step at a time.

    Vicky

  8. #138
    Senior Member kate's Avatar
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    Tuesday night, 7:45 pm

    And that means it's almost time for the Gilmore Girls! My kids and I got into the habit of that show a couple of years ago . . . pre-sci, when it was on while Bruce was at choir on Thursdays. Still a good way to spend an hour with kids; the writers are smart, and they deal with stuff that needs to be talked about.

    Like, once there was a show where the absent father showed up, and (very casually) tried to get the teenaged daughter to keep some information from her mom. I remember how upset my girls were, at the idea that one adult might try to get them to lie to another.

    And I used that little scene later, when people were saying (ever so hesitantly) that I ought to be careful with one of the family friends who was spending a lot of time with our kids while I was with Bruce at the hospital . . . like, he seemed awfully, uh, cuddly with our 7th-grader. (I had to spend a LOT of time at the hospital in those first months, because he could neither breathe well or speak above a whisper, and if someone wasn't with him, the night nurses just might not know if he was in trouble.)

    It creeped me out so bad! I pulled it together and asked Emily if, uh, he had ever asked her to keep anything from me . . . like that time on the Gilmore Girls. She knew instantly what I meant, because we'd seen the show, and talked about that--how bad it would be for any grownup to suggest she not be truthful.

    He wasn't doing anything he shouldn't have been, as it turned out . . . just not being savvy about boundaries. Anyway--It's not just entertainment for us, though it IS really fun. And it's on NOW!

  9. #139
    The Internet is MINE!!

    Apparently the idea with Brianna's online class is that you must post your homework by midnight...but if you happen to post it a 4 am, it's okay. In other words, before the instructor gets up and turns on her computer! So Bri is sound asleep, having gone to bed LONG after I did last night...and the internet is mine!

    Thank God for this forum. I've spent the last two days arguing and totally frustrated. All I wanted was a local medical equipment company to supply Brianna with catheters. This shouldn't be a big deal. It was. I went through two companies; one finally decided they would bill me personally and leave me to deal with my insurance, and the other flat out refused to deal with me at all. They were spooked by the fact that my SECONDARY insurance is my car insurance (which DOES NOT pay for catheters since my health insurance DOES). BUT...the happy ending was found here. I found UroMed's site online, but didn't know anything about them. Thanks to high endorsements I found on CareCure(you were one of those folks, Martha) I contacted UroMed and it was like night and day! What would I do without you guys?? It's a wonder I'm not gray yet...

    Also bought the plane tickets for Craig yesterday; I have to call this afternoon and get a final, definite "yes" on the date. I could not BELIEVE the difference in price when you purchase tickets so soon before departure! Ouch! Anyway, we fly out of Pittsburgh on Sunday...

    Any other news out there?
    Vicky

  10. #140
    Senior Member martha's Avatar
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    Vicky -- So glad you contacted UroMed. They are so fantastic to work with and as I've said, they got my insurance to pay and my insurance doesn't pay for anything! They must be miracle workers. Plus when I told them I couldn't afford the huge difference in what my insurance paid and what the actual cost was, they agreed to settle for just the insurance payment. What a relief that was! They also got insurance to pay for the Magic Bullets Julian uses for his bowel program which was another miracle. I love those people!!!!!!

    Ok, That "I'm not gray yet" comment really hit home here! Now I'm REALLY feeling old as I look at the gray streaks and yes, gray roots. Ugh. I felt old when I woke up anyway. But then a friend sent me a wonderful Andy Roony (can't stand him but liked this one) article about women over 40 (in a favorable light for a change), so that helped.

    It's just one of those days you wish you could stay in bed with a good book and hot coffee.

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