Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Hi! I just read your jokes and had a good laugh because I like you have had a bad couple of days so darn depressed and I take med's for it. Good Luck Bert tommorro on your cat scan, I don't mind them at all. I really hate the MRI's. Where are you from Bert? I am from Central New York, about 275 miles from the city. Held my breath last night when the ball dropped thought something would explode. We all have a little bit of paranoia. Everytime I hear a plane fly over I hold my breath. I hope we can get more acquainted I haven't been posting a lot have gone through a couple of weeks of nausea and pain every muscle and bone I think. Take care and will be thinking of you and tommorro. Hug's, Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi Bert, I'm sorry about your lab results.... But I see that you are still having your sense of humour in all of this...I agree, sometimes too much info is stressing...There is one thing I do every morning its like my morning prayer. I started the day I heard I had AIH. I start my day singing "One day at the time". I don't know if you know that song, but I sang it until I felt peace coming back into me. It still help me to go through some days. I pray and wish for you the peace that only Divine Power could give you ....Hang in there!!! Tomorrow will be a better day.. LOVE - from Canada sunshinedotson@... wrote: Well, I wish I could say I was happy today. But I am quite the opposite. Been crying and very upset.My LFT's were almost triple for the ALT and double forAST. just from last Jan. 16th. I was very upset, so upset that I couldn't post it here until now. Found out this morning.....I decided to post bec. you all are my friends and want to know whats up with me, as I do you. But it really hit me hard. I am really having a difficult time managing my health. My Gastro is on vac. for 3 wks. Who ever said that Dr.'s can take vac.'sanyway... : )My PCP is sick! So I couldn't speak to either of themabout this, which was more difficult. Gosh, if my LFT'skeep going at this rate, I will be a nervous wreck!I have 2 more months of my monitoring, according to PCP. But when Gastro gets back, maybe he will change his mind about the biopsy, who knows. He hasn't seen the results from the scan, and 2 months of blood-work yet. Maybe he'll say ok let's do the biopsy, and maybe he'll just say "again" to lose more weight first...... ly right now, I don't give a damn what the Dr.'s say, they are making me feel like I need a Therapist! (self-pity, i know)So what......My ALT was 150, up from 83. AST was 83, up from 45.When on the Prednisone, both of these tests werealmost back to normal. Now look at them. Are these high? maybe not to you, but they are to me. I have too many issues, and for anything to keep getting worse, even slightly, isn't good. I could go back on Pred. if that's what the Dr. suggests, but now I am terrified of what the Pred. can do to my Diabetes.I wasn't afraid of the med. before, but I am now....More info. is great, but can often just create more stress. I am afraid of what? .......Being another victimof the health profession that don't take patientsseriously. Can I change Dr.'s and fight for my rightsas a patient? Sure I can, ...all alone, with no energy!YEP! I'll get far! Like I said, you people are all I have.(i know, more self-pity) Maybe tomorrow, the sun will shine and I will be in a better mood. But for now......I am depressed. I desperately need my health to turn around in the right direction. Some say, take your time, it'll happen......We'll I look around at my kids and say, I need to care for them now, not later on. I need Dr.'s to take this seriously now, not later....what do I have to do???? scream at the top of my lungs!????? Just bec. my numbers are not so high that I am nearly death, means that, hey, the Dr.'s can take their time with me? OH, let's experiment on her some more, let's really see how sick she will get! Call me paranoid if you wish, but this is where I am at! (today anyway)HA! I can't even get a 2nd opinion without PCP's ok.I can't see a specialists without PCP's ok. Hell, I can'teven change PCP's but once a month according to my INS. co.(that I pay for!) But a Dr. will say, take better care of yourself, if you had, you wouldn't be in this predicament. Or, you shouldn't have joined a groupof AIH'ers, that was too pre-mature! So who is in charge of my life again? ME? to a small degree yes.The way I see it, I am being controlled. When I have tests, how often, when to take meds., when to stop meds., go here, do this, do that! Just for them to say, well......just wait, you'll be ok. No REAL DAMAGE can occur in just 3 months. Meanwhile, I feel like crap everyday! Gosh, I think I need a therapists now.....Also for some reason, my anti-depressants aren't working to help me sleep anymore, this past week.Just so tired of it all. I want to be a veteran of all thisNOW! Let's move on with it already! I think I need to write a book! Pondered this for a while now. I have had a very abnormal, and dysfunctional life,all the way back to when I was a little-bitty kid.Learned many hard lessons in my life for only being 34. Experienced way too many horrible things, that most people would never experience in their entire life time. Am I really experiencing self-pity right now, or one hell of a good dose of reality?? I don't know...Really feel like I just hit the concrete at 50mph, face down! I'll put make-up on tomorrow, so the bruises won't show...... : )Thanks for listening.....Just delete me please, as I will pick myself up tomorrow and will be fine........as usual.... Have a good night, I am going to spend some money..... : ) HUGS.....Bert. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 In a message dated 3/1/02 6:39:20 AM Pacific Standard Time, jeanette_cuk@... writes: Dear Bert It takes guts to be able to admit when we are in the wrong but for you to admit to it in front of 500 people takes real guts. I take my hat off to you, you have had and still have a lot of health problems like we all do but you still find time for others. Be kind to you self. God bless. Love and hugs Jeanette UK Thanks Jeanette..... Love and Hugs..... Bert. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Hi Bert, You're a scream as usual - but it hurts to laugh! Hey, my butt's just as big, I'm sure! Thanks for the support, it's amazing how the messages from you guys really help. My husband just looks at me and shakes his head and says I told you not to........ I hope all those men (boys) in your life looked after you really well on Mother's Day. Of all people, you really deserve it! I am really enjoying the comedy site..........Thanks for signing me up. I think something like that is so beneficial especially to people in our predicament. Love, Bozena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Hey Bert I had to laugh when I read your post about Siobhan's name! No-one knows how to pronouce it! I make jokes about moving to Ireland all the time! We did (briefly) think about a 'made-up' spelling, but decided that would confuse everyone, even the 1% of people who have heard of it! Air Conditioning would be a GREAT idea, as Siobhan had difficulty sleeping in our heat, and we'll be heading into Autumn soon.... I don't know if casting is better/easier with different types of curves? I've never heard of this??? Before Siobhan's first cast was applied, they did a 'traction x-ray' to see how flexible her spine was, as that would determine how much correction the doc's can hope for. Enjoy watching the video. And good luck in your search for an Ortho willing to cast! Jacki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Bert, Its my understanding that POP jackets arent as effective for kyphosis in holding the curve or correction. HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 what about hypokyposis ?>HRHandCO@... wrote: Bert,Its my understanding that POP jackets arent as effective for kyphosis in holding the curve or correction. HRH __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 , I disagree (sorry). I have never heard of a baby at 38 degrees that does not progress. Some progress faster then others. The Rvad is important, however some children with a low RVAD will still progress. s little girl Olivia had an RVAD under 20 and went up to almost 100 degrees. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Wow, Jacki I have never heard of Marfan's Syndrome. So if the idea of the cast is to train the spine to grow straight then theoretically if the kids have a growth spurt they are growing in the right direction? Why are the casts more comfortable than a brace? They wouldn't be any more flexible would they? Sorry to be so inquisitve. Bertjabostock <jabostock@...> wrote: Siobhan's curves did stay the same too, for a year. Before she went into the brace, she was x-rayed every 3 months, with exactly the same measurements. Finally our Ortho said to come back in 6 months, instead of 3 for an x-ray. Unfortunately within a month I could physically see a change in her back. We made an appointment, earlier, and her lumbar curve had increased by 12-15 degree's. And she'd grown an inch and a half within that month too!!!!I never found out Siobhan's RVAD (our last Ortho wasn't very approachable!). But as he'd told us that Siobhan has a Connective Tussue Disorder, and he was very sure it would get worse, I never bothered to ask!!!So, between Siobhan's age and her diagnosis of the Connective Tissue Disorder (she's followed for Marfan Syndrome), we don't know for sure if the casting will totally correct her forever. But, I want to tell her when she's older, that we did everything we could for her.Jacki> Thanks ,> Bridget has idiopathic scoliosis. We have had an MRI. She has ony been xrayed 3 times March May and July of this year. Each time her curve was measured at 38 degrees. The surgeon does describe her curve as flexible though so I am hopeful that she might respond to casting but aware that, like Jacki's Siobhan she is older (3and a half). I suppose what I really need is an RVAD and I will try to find someone who will help me with that from Monday. Thanks Bert> >> > > ---------------------------------> > > Do you ?> > > New and Improved - Send 10MB messages!> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 No apolgies necessary. I haven't lived it like many here. I defer to the experiences of all of you. Like I referred to in earlier post, real life and statistics too rarely coincide. Of course 38 is a number to start intervention. I just hope there will be no further progression. Casting sounds like a very good option to ensure that and give a great chance to reduce it. Re: Re: To Bert ,I disagree (sorry). I have never heard of a baby at 38 degrees that does not progress. Some progress faster then others. The Rvad is important, however some children with a low RVAD will still progress. s little girl Olivia had an RVAD under 20 and went up to almost 100 degrees.Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Bert, Im so glad that this group has been able to provide you with info. Now, you can make an INFORMED (not yelling when I add caps, just putting emphasis.....) decision on the care of your precious daughter Bridgette. Im not too familiar with neuro issues...... Anyone else want to comment on this? Sincerely, HRH Quote Link to comment Share on other sites More sharing options...
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