Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Dear Crew, I'd like to officially introduce my life partner, ston. I sometimes refer to him as JJ. Since the crunch is bearing down on me (I have bilateral acoustics - one was removed in '96 making me deaf in my right ear and the one on the left ear is growing and the surgeon said " learn speech reading " in July to me) I've asked to get more involved in my " neurological / surgical " life. So far, I felt I could handle everything on my own, with a lot of help from the crew. But now, since I'm confronted with some lifestyle change (speech reading classes - maybe sign classes for the 2 of us and more of my time being consumed with matters medical) I've asked to really become a partner in what I have to deal with and he's ready to. So he's joining the crew and helping me do research on my intervention options. and I have been together for 12 years. He has 3 grown kids and 3 great grandkids who we actively parent and grandparent together. His leading medical problem is rheumatoid arthritis which means a lot of walking doesn't always feel so good to him. Just to round out the picture, he is an artist, pianist, woodworker, graphic designer, book producer (worked in publishing), and brochure/ invitation/ newsletter producer. Together we have hosted several crewbies when they've come to NYC. We also went to the Florida Aldacon, the D.C. NF Foundation meeting, and Marie's ANA shindig in Pittsburgh so a number of you have met him. I'm happy to have him join us. Barbara B., NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Welcome !! I learned more about you in that e mail that I knew in two years!! Marie P.S. (And to prove he's a nice guy, he came from Pittsburgh!) B2@... wrote: > From: B2@... > > Dear Crew, > > I'd like to officially introduce my life partner, ston. I sometimes > refer to him as JJ. > > Since the crunch is bearing down on me (I have bilateral acoustics - one was > removed in '96 making me deaf in my right ear and the one on the left ear is > growing and the surgeon said " learn speech reading " in July to me) I've asked > to get more involved in my " neurological / surgical " life. So far, I > felt I could handle everything on my own, with a lot of help from the crew. > But now, since I'm confronted with some lifestyle change (speech reading > classes - maybe sign classes for the 2 of us and more of my time being > consumed with matters medical) I've asked to really become a partner in > what I have to deal with and he's ready to. So he's joining the crew and > helping me do research on my intervention options. > > and I have been together for 12 years. He has 3 grown kids and 3 great > grandkids who we actively parent and grandparent together. His leading > medical problem is rheumatoid arthritis which means a lot of walking doesn't > always feel so good to him. Just to round out the picture, he is an artist, > pianist, woodworker, graphic designer, book producer (worked in publishing), > and brochure/ invitation/ newsletter producer. > > Together we have hosted several crewbies when they've come to NYC. We also > went to the Florida Aldacon, the D.C. NF Foundation meeting, and Marie's ANA > shindig in Pittsburgh so a number of you have met him. > > I'm happy to have him join us. > > Barbara B., NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 welcome aboard On Mon, 25 Oct 1999 21:18:55 -0400 (EDT) WURSJEFF@... (Jeff Wurst) writes: >From: WURSJEFF@... (Jeff Wurst) > >Welcome to the crew . > >JEFF >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Welcome aboard !!!!!!!!!! I am Caren, 22 years old from Buffalo NY. Although I dont have the ABI, maybe some other ways Ill be able to help you through all this stuff and you can return the favor anytime smiles caren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 LIsa, This is Tara. I have had the ABI it didn't seem to work for me though so I had the ABI receiver removed and may give it another chance down the road. Tara On Mon, 25 Oct 1999 22:05:20 EDT NYPeAcHGrL@... writes: >From: NYPeAcHGrL@... > >Welcome aboard !!!!!!!!!! > >I am Caren, 22 years old from Buffalo NY. > >Although I dont have the ABI, maybe some other ways Ill be able to >help you >through all this stuff and you can return the favor anytime > >smiles >caren >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Welcome aboard !!! I had the ABI implanted in June. I give it a huge thumbs up. Feel free to email me. Hugs, in Mississippi claudia@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Welcome to the crew . JEFF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Welcome , I'm 25 and its nice to have another young body on the list. Hope to talk w/you soon. -Earl E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 WWelcome ! As someone who is trying hard to preserve her remaining hearing, and I have a large tumor, can I ask what kind of radiosurgery you had? As far as the ABI, I am looking at it as a back up also; did you worry about " scarring " from the radiation? I understood if the brainstem is scarred it is more difficult to correctly place the ABI; this is just what I have heard, do not take it as fact. Marie New Member > > > >Date: Mon, 25 Oct 1999 20:48:51 EDT > > >Hi Carla, > >Well here's a little something about me. People call me so I'd >prefer >to be introduced that way. I am 21 years old and was diagnosed with NF2 >five years ago. I had surgery on one side to remove a very small tumor >and >lost all hearing, which was a bit of a shock to everyone including >doctors. >Then I had radiation therapy last summer as the hearing in my other ear >started to go. The therapy has done well so far but the hearing is >pretty >much gone. So I'm pretty much a deaf person. I am excited and nervous >to >talk to others with NF2; this is my first contact of this kind. I hope >to >learn a lot from this group. My very first question and current topic >of >interest is the ABI (auditory brain stem implant) and how well it works, >etc. Anyway, thank you for including me in your discussion and support >network. > > >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Susi: Thanks for your email, as you suggested I sending my insulin regimen. << Tell us your insulin regimen. Maybe we can put our heads together and come up with a dosing schedule that gives you better control. You must bring your readings closer to 100 in order to enjoy good health and a reasonable expectation of avoiding complications. >> Glucose Before Before Bedtime Readings Breakfast Lunch Dinner (Insulin Type) R N R N R N R N units units units units < 70 0 32 0 0 0 28 0 0 71 - 100 1 32 0 0 1 28 0 0 101 - 120 2 32 0 0 2 28 0 0 121 - 150 3 32 1 0 3 28 0 0 151 - 180 5 32 2 0 4 28 0 0 181 - 200 6 32 3 0 5 28 1 0 201 - 220 7 32 4 0 6 28 2 0 221 - 250 8 32 5 0 7 28 3 0 251 - 300 9 32 6 0 8 28 4 0 301 - 350 10 32 7 0 9 28 5 0 351 - 400 11 32 8 0 10 28 6 0 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 Re: New Member Vicki wrote to : << ... Some people do appear to do okay on the ADA food pyramid...but lower carbing makes a lot of sense too when you think about how carbs turn into sugar. >> We're all individuals ... but most of the diabetics I know who follow the Food Pyramid are either injecting insulin to " cover the carbs, " or taking a sulfonylurea, or exercising 1-1/2 to two hours daily to try to burn off those carbs. Diabetes is an inability to handle carbohydrates. A diabetic eating what I consider to be a high-carbohydrate diet is paddling upstream, it would seem. If you are able to do it, congratulations! Most of us really miss our carbohydrates ... We don't avoid them because they're icky ... We just can't tolerate them. But ? Your 29 HDL is scary-low. Men should have an HDL above 40, and women should have one above 50. With respect to the HDL, I am now taking 40 mg. of Pravachol daily. It seems that you're damned if you do and damned if you don't. I have been taking Zocor for 5 years to address my LDL of 165, and now that it's 89, I stop taking it in order to do the Pravochol. Do you suppose that lower carbs could help the HDL? ) I fail to understand the fixation on the low carbohydrate approach. I was diabetic before Bernstein even wrote his book, and have done quite well without his guidance. I don't strictly adhere to the ADA Pyramid plan all the time. There are times that I reduce my carbohydrate intake if my BG reading get a bit high. I also have two copies of the " Glucose Revolution " which I consult frequently. I suppose I'm more concerned with overall nutrition with my Way-Of-Eating than I am with carbohydrate counts. I am not convinced that the proteins and fats that many people use to supplant carbohydrates in their diets are all that healthy for many people -- me included. I don't have papers to peddle for one approach or the other. My recitation is only of my personal experiences in determining my own Way-Of-Eating. I have never, however, covered over carbohydrate intake with insulin. I always match my food intake to my insulin intake, and if one gets cut back, it's the food and not the insulin, and vice versa. My insulin intake is 92 units per day, which is not bad for a Type 2. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Welcome to the group , I find this group a blessing too , it helps me tremendously!! Deb --- wrote: --------------------------------- Hi everyone, I just found and joined the group today. What a blessing!!! I was diagnosed with Fibromyalgia a little over a year ago, after two years of severe pain that the doctor's kept telling me was all in my head. I have been scanning through some of the recent post and it is amazing and comforting to see that so many of the problems I have been experiecing in the past few years in those posts. For just a little fyi about me, I'm 39, a single mom of two teenagers and I live in south Arkansas. Until later, 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general. 2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better. Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Dawn, welcome to this goofy group. We look forward to hearing about you. Hugs, Camilla New Member Hi All, Just joined your group today, my names Dawn, I have FMS/CFS, IBS, food & environmental allergies and a few other minor ailments. Hope everyones fine. Take care, Dawn 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general. 2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better. Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.