Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 In a message dated 3/24/2002 12:27:33 AM Eastern Standard Time, AngelBear1129 writes: sorry you have been feeling down ( Hope the IBS gets under control soon... That is nasty stuff.. Don't let folks stress you out... Isn't that what you keep telling Me??? ) ((( Many Special Hugs ))) Helen sorry you have been feeling down ( Hope the IBS gets under control soon... That is nasty stuff.. Don't let folks stress you out... Isn't that what you keep telling Me??? ) ((( Many Special Hugs ))) Helen ********************************************** Being an earth angel doesn’t always involve something major, such as saving a life. Sometimes we’re just needed to hold a hand, whisper a word of comfort or even provide food or drink. As one writer put it, “If People were more like Angels, Earth would be more like Heaven.†Think about it during this very special week.. ********************************************** "Encourage one another. Many times a word of praise or thanks or appreciation or cheer has kept people on their feet." Swindoll ********************************************** "Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom." Marcel Proust *********************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 ((((((( HUGS ))))))) I'm sorry that the Dr. just doesn't listen ( Isn't there another Dr. in your town that can help you??? Is the pain from your M.S. ??? Is that what is causing your vision problems also??? I do hope and Pray that you will be able to get a differnt Dr. A person shouldn't have to be rich to be able to get quality care... ((( Angel Hugs ))) Helen they didnt do anything for me... thats the bad part... kaiser is the devil i tell ya... lol... my neurologist is satans best friend...lol... they gave me IV steriods and other things but nothing works and doctor is anti pain meds... she will try every drug in the book (none work after 27 drugs this year alone) but refuses narcotics... acts as if the world is nothing but junkies... and that is so against the law, and we are real close to filing a lawsuit since my quality of life is so affected now and I am better off dead. Dont get me wrong, I dont want to be on narcs if I can help it but at this point in my life it has become a necessary thing to try. Life just really sucks and I am sure waiting for my break... I need to win the lottery... so i can find a new doctor... My vision stinks, my pain is bad, my movement is bad... when it rains it pours.... sandra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 there are other doctors but money is very tight and i am having a hard time even coming up with food and diaper money so there is no way I can afford another doctor and my current one is the only only covered my my crappy insurance...yes the vision and pain is caused from the MS.... ** Help a child have a happy day- Check out www.sendingourlove.org My personal site - www.sandrascountrycloset.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 ((((( HUGS ))))) I wish we could All go where we want to for a Dr. instead of where they tell us that we can... Are you getting SSI or SSDI ??? if not aply for it and you should be able to get it right away, because you are down so much and so ill... How is your little one doing??? What size does she wear??? I might sew her a dress!!! Well I have to go... The jerking has started and I can't sit here anymore ( Keep us posted ) ((( Many Easter Hugs ))) Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 No I am not getting any disability, and my doctor said she wont sign anything for me because she said I need to just lose weight and get over things. Nikki wears a size 3... She is growing like a weed. We are getting her pictures taken today so when I get the proofs, I will privatly email you a pic (don't want it going over the list)... they should be cute though. We havent had a professional picture taken since valentines 2001 (yes I know I am so bad lol) but finally we are doing it .... hopefully i will feel up to getting her ready for it... ** Help a child have a happy day- Check out www.sendingourlove.org My personal site - www.sandrascountrycloset.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 How are you doing ??? Is the diabetes doing alright??? Heart doing fine??? Are you near the Floods there in Texas??? ((( Concerned Hugs ))) Helen </center> “If People were more like Angels, Earth would be more like Heaven.†Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Hello Helen For the most part, the weather has been quite nice here albeit a bit hot and humid for my liking. No flooding around here for a change. I seem to be running glucose levels ranging from 100 to about 190. One of my co-workers who was also recently diagnosed with type II diabetes keeps asking me questions about the condition and what to do. My cardio appointment is on the eigth so I guess we'll find out if discontinuing all those meds in order to not aggravate the diabetes is putting too much of a load on the heart. My Endocrinologist thinks that my BP is running high and that some of the heart meds need to be reintroduced. He actually wanted me to go back to my Cardio weeks ago but I wasn't about to play Doctor tennis. I think I'm supposed to follow up with my GP and Hematologist but I don't remember if I had set an appointment or not. I need to get a new organizer. Regards, angelbear1129@... wrote: > How are you doing ??? Is the diabetes doing alright??? Heart doing fine??? > Are you near the Floods there in Texas??? > ((( Concerned Hugs ))) > Helen > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 You keep an eye on that sugar... 190 is too high I think... Yes you have had one very Terrible year...But your heart does seem to be doing somewhat better... Call your doctores office and ask them when and if you have an appointment... Glad the weather had been nice for you:o) Take Care . Keep us posted... ((( Sunny Hugs ))) Helen If People were more like Angels, Earth would be more like Heaven. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Well that's good news then... Does your ankle swell up, when it acts up ??? I don't want to give you Cloudy Hugs ) How about ((( Caring Hugs ))) Helen <center></center> If People were more like Angels, Earth would be more like Heaven. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hello Helen My Hematologist says that as long as it isn't in the two to three hundreds, I shouldn't worry about it. I do find that when it hits two hundred, that ankle that was giving me all the trouble a few months back acts up. People in Houston are glad when it's cloudy cause that takes the edge off the heat. Regards, angelbear1129@... wrote: > You keep an eye on that sugar... 190 is too high I think... Yes you have had > one very Terrible year...But your heart does seem to be doing somewhat > better... > Call your doctores office and ask them when and if you have an > appointment... > Glad the weather had been nice for you:o) > Take Care . Keep us posted... > ((( Sunny Hugs ))) > Helen > > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 cant help but mention the heat in Houston. In 1981-a log time ago we were on our way to Harlinegen texas and our car broke down in Houston-the entire rear axle broke. We had to take a plane into Harlingen and leave the car there. The next morning my father got up and suffered a heart attack and was gone. We also found out that day that it would take two to four weeks for the auto fix it place to order another axle for us so we were stuck between Harlingen and Houston for amonth. It was good for my mother for us to be there but I will never forget how sick the heat made me. carol On Wed, 01 May 2002 20:13:38 -0500 Wang <jwang@...> writes: > Hello Helen > > My Hematologist says that as long as it isn't in the two to three > hundreds, I shouldn't worry about it. I do find that when it hits > two > hundred, that ankle that was giving me all the trouble a few months > back > acts up. > > People in Houston are glad when it's cloudy cause that takes the > edge > off the heat. > > Regards, > > > angelbear1129@... wrote: > > > You keep an eye on that sugar... 190 is too high I think... Yes > you have had > > one very Terrible year...But your heart does seem to be doing > somewhat > > better... > > Call your doctores office and ask them when and if you have an > > appointment... > > Glad the weather had been nice for you:o) > > Take Care . Keep us posted... > > ((( Sunny Hugs ))) > > Helen > > > > > > > ... > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives and Digest Attachment Pictures:- > /messages > > Chat:- Scheduled Daily Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you > receive. > 2) Daily Digest - sends you 25 messages in one single email for you > to browse. This is an excellent option if you receive alot of > email. > 3) Web only/No mail - means that you can pop into groups at > your convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > ogroups.com > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 cant help but mention the heat in Houston. In 1981-a log time ago we were on our way to Harlinegen texas and our car broke down in Houston-the entire rear axle broke. We had to take a plane into Harlingen and leave the car there. The next morning my father got up and suffered a heart attack and was gone. We also found out that day that it would take two to four weeks for the auto fix it place to order another axle for us so we were stuck between Harlingen and Houston for amonth. It was good for my mother for us to be there but I will never forget how sick the heat made me. carol On Wed, 01 May 2002 20:13:38 -0500 Wang <jwang@...> writes: > Hello Helen > > My Hematologist says that as long as it isn't in the two to three > hundreds, I shouldn't worry about it. I do find that when it hits > two > hundred, that ankle that was giving me all the trouble a few months > back > acts up. > > People in Houston are glad when it's cloudy cause that takes the > edge > off the heat. > > Regards, > > > angelbear1129@... wrote: > > > You keep an eye on that sugar... 190 is too high I think... Yes > you have had > > one very Terrible year...But your heart does seem to be doing > somewhat > > better... > > Call your doctores office and ask them when and if you have an > > appointment... > > Glad the weather had been nice for you:o) > > Take Care . Keep us posted... > > ((( Sunny Hugs ))) > > Helen > > > > > > > ... > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives and Digest Attachment Pictures:- > /messages > > Chat:- Scheduled Daily Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you > receive. > 2) Daily Digest - sends you 25 messages in one single email for you > to browse. This is an excellent option if you receive alot of > email. > 3) Web only/No mail - means that you can pop into groups at > your convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > ogroups.com > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Hello Helen No it doesn't swell up. No swollen ankles since last year. It's more like a sprained ankle that doesn't take the weight too well. High blood sugar definitely sets it off though. I guess it's my own built in glucose meter. Regards, angelbear1129@... wrote: > Well that's good news then... Does your ankle swell up, when it acts up ??? > I don't want to give you Cloudy Hugs ) > How about > ((( Caring Hugs ))) > Helen > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Hello Helen No it doesn't swell up. No swollen ankles since last year. It's more like a sprained ankle that doesn't take the weight too well. High blood sugar definitely sets it off though. I guess it's my own built in glucose meter. Regards, angelbear1129@... wrote: > Well that's good news then... Does your ankle swell up, when it acts up ??? > I don't want to give you Cloudy Hugs ) > How about > ((( Caring Hugs ))) > Helen > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Maybe the second email I sent to the list might help ya... Having your own built in meter, Hmmmm, might be a money maker... Think so ??? Your a gem to have around ... You keep things lively... ) ((( Happy Hugs ))) Helen </center> If People were more like Angels, Earth would be more like Heaven. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 I to have an 11 mo diagnosed with IgA deficiency. They tested his IGG subclasses and pneumoccal. This showed his IgG subclass 4 was low and that his prevnar vaccine did not take. He will be getting another prevnar as soon as he gets over this bug he has and be retested. He also has not been seriously ill. They sound very much a like actually. His birthday is June 6. - > I'm not sure if I'm doing this right or not...but I'm going to give it a > shot! My name is Shanna and I have 2 boys. One is 3 and one is 11 months > (both about to have a birthday this month) My immune deficient one is the 11 > month old. He started early on with many problems...none really > severe...just consistent! I nursed him for 8 months so I'm contributing the > fact that he's never had an ear infection to the nursing! However, he's had > alot of other things to make up for it! He's had chronic bouts of > bronchitis...constantly on breathing treatments/prednisone and has been on 3 > antibiotics in the past 2 months. I thought it was " just " allergies so we > went to the allergy/immunology doc and he was tested for all the common > things and foods and the only thing he tested positive for was soy (which was > the formula he was on...not to mention everything has soy in it) and eggs...I > still wasn't satisified...we took him off the soy formula but he still had > problems...So, I requested that he be tested for IgA and IgG...and sure > enough his result was <5 on his IgA (which someone told me usually means none > detected) however, his IgG was normal. They proceeded to tell us what the > precautions were if this held true later on (assuming it could > change)...being that he couldn't have blood products and would be susceptible > to everything. He then started having many GI problems (diarrhea type bm's > but not exactly...kinda cottage cheese consistency) and this has gone on now > for 3 different episodes all lasting about a week then going away (i was > thinking maybe it was teeth...but it's really strange if it is) He also gags > and throws up alot w/different types of foods...and this is usually around > when he's having the yukky bm's....this last time that it happened our PED > was going to send us to Houston (we live near there) since I had a lot of > questions anyway...assuming it could be related to the IgA def. But they > wanted to do some cultures first and sure enough it all stopped so I haven't > been able to get one. I just have so many questions. Like, what is the > liklihood that it will change and he'll acquire the missing IgA antibody? > And, should we request any further testing (like the sub classes, etc?) Or > whether or not the antibody's to his immunizations took? Or am I just > borrowing trouble way too early? I'm going through a divorce right now so > unfortunately I'm having to work...I had a sitter for 4 months coming to our > house (i stayed home for 5 months before I couldn't take it anymore w/my > husband)...now he's been in daycare for 2 months and has been on 3 > antibiotics...I can't keep missing all of this work either...I've read of > some people who have gotten their children on disability for one reason or > another...I don't know if my situation would warrant it...except that I could > stay home w/him and not have to spend all of my child support to daycare > which is making him suffer...and use the disability $$ also as a suplement. > Or I was wondering about long term disability at my present employer...I > think it covers taking care of someone who is sick. I'm almost to the > desparate stage. Sorry this is so long...but I needed to vent!! > > Shanna > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Shanna: We were told that if you don't have any IgA, you never will. Our daughter had no IgA at age 1, her secretory IgA was " absent " . Still deficient at 2. Now at 3 yrs old all of a sudden she has some IgA! They were surprised, but it's not impossible. We don't know if she has a slight IgA deficiency still, or if she's just over the border of normal, as the secretory IgA test was not sensitive enough to tell, and her serum IgA always shows a false increase due to her cow's milk allergy. I don't want to give you false hope, I'm just saying never give up hope. They told us that due to our daughter's many and varied deficiencies (at one year of age) that this would be life-long, that it was not transient. Well, she has improved on everything except the Prevnar (conjugated pneumococcal vaccine) antibody response (and maybe slightly low IgA, we just aren't sure). On another note, always got diarrhea and an ear infection during a teething episode. Ped said it was related to the teething, that that is not uncommon. (mom to , age 3, polysaccharide antibody def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Shanna: We were told that if you don't have any IgA, you never will. Our daughter had no IgA at age 1, her secretory IgA was " absent " . Still deficient at 2. Now at 3 yrs old all of a sudden she has some IgA! They were surprised, but it's not impossible. We don't know if she has a slight IgA deficiency still, or if she's just over the border of normal, as the secretory IgA test was not sensitive enough to tell, and her serum IgA always shows a false increase due to her cow's milk allergy. I don't want to give you false hope, I'm just saying never give up hope. They told us that due to our daughter's many and varied deficiencies (at one year of age) that this would be life-long, that it was not transient. Well, she has improved on everything except the Prevnar (conjugated pneumococcal vaccine) antibody response (and maybe slightly low IgA, we just aren't sure). On another note, always got diarrhea and an ear infection during a teething episode. Ped said it was related to the teething, that that is not uncommon. (mom to , age 3, polysaccharide antibody def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 I just thought I could offer you some encouragement. I have a 2 yo that has been diagnosed with autism. Since then with his early intervention and our understanding that he is just not like the other kids he has come amazingly far. He was diagnosed in september. He is now extremely social and has good eye contact. He is also making huge leaps now that he has music in combination with speech. In four short weeks I would have to say his receptive communication skills have jumped from that of a 12 mo to that of a 18-20 mo. Its amazing. I am just saying this so you can know that no matter what they say, with early intervention, school services or private services they can so help these kids. Its amazing to suddenly have a clear picture of what is going on and then to see the change when they finally know how to help them. Good luck -- > Thanks for your kind words, . I am wondering now if the doctor has > waited on the VZIG because he falls in that window where he should be > covered by the IVIG. It sounds awfully painful though. Kody hates > rocephin shots for that reason too. Today is the day I find out how his > neuropsych evaluation went. I am very nervous. I am trying to take care > of myself too, it is hard though, you know how it is, Mommy has to come > last and by then I am pooped!! lol Hope all is well with your family!! > Diane Mom to Kody > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 In a message dated 5/14/02 9:56:07 PM Central Daylight Time, bunneegirl@... writes: << during a teething episode. Ped said it was related to the teething, >> that's what we thought too...but it was always so much...8 times in one day sometimes...and was never diarrhea...just very very loose! i'm still not convinced it isn't from teeth! tell me about the difference between regular IgA and secretory IgA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Hi !!! Welcome to the Group!!! My name is Helen--51 from Ohio--I'm the Worrier and the Nosey one ) My Goodness, you sure do have a lot of Overwhelming health problems ( On here, No One has worse problems than the other... We All have Overwhelming Problems... ) Will have to look some of these up, have never heard of some of them... Are you in a wheelchair??? Do you have help taking care of the children and yourself??? You sure do have a Positive Attitude ) That's half the battle ) Nope, Not long winded ) On here, no post is Too Long or Too short ) All are welcome to post... It does help to be able to talk with others and to releive yourself of frustrations that all these illnesses buid up... Its just nice to have a place to vent and share... There are a LOT of nice folks on here... In this Group, there are All Different kinds of ailments... Some of the folks have some of what is in your list too... By the looks of your email, do you live in Texas??? We have three others on here from Texas ) Thanks to your Friend for showing you the way here... Hopefully we will help each other ) Do they have the next surgery scheduled for you yet??? Again Welcome aboard... ((((( Welcoming Hugs ))))) Helen > > My name is . I am 41 years old, and I have multiple health problems > as do both my teenage boys (ages 15 and 16). Between the 3 of us, we > suffer from Ehlers-Danlos Syndrome, Asthma and Allergies, Dysautonomia, > Neurocardiogenic Syncope, Severe Narcolepsy with Cataplexy, Irritable Bowel > Syndrome, Severe Osteoarthritis, Osteoporosis, Osteopenia, Spinal Stenosis, > Spinal Spondilosis, and have many drug allergies and hypersensitivities. I > have never been a healthy person, ever. It has taken me many years to seek > out and find the right diagnoses for myself and my children, and the right > help for each problem. We struggle and cope, and we are fighters.....we've > had to be overcomers. We have loads of compassion and empathy for others > who suffer from any type of chronic illness or pain, because we live it > every day. As all of you know, we all have good days and bad days. My > oldest son has a bad heart, and hasn't been able to attend public school > since mid-December 2001. In the past month, he has had a heart cath and EP > study during which his heart stopped twice and they had to cardio vent him > (shock) twice to get his heart beat back. He currently has an implanted > Loop Reveal Recorder to monitor all of his heart's functioning. This is > the next step on the way to the implantation of a pacer and/or > defibrillator. I have had 13 major surgeries for different reasons, > including a cervical fusion at c-4, c-5, and c-7 (c-5 could not be salvaged > and was removed). I now need a second fusion beneath the first, as those > vertebrae have now crumbled and collapsed. I know all of this is > long-winded, and I sure hope I don't offend or overwhelm anyone. I just > wanted to try and cover all the main sicknesses my little family of 3 have. > I know that others out there suffer much more than we do, and that we are > really very blessed to be in as good a shape as we are, all things > considered. This group was recommended to me by a dear, courageous friend. > I look forward to getting to know all of you. Please feel welcome to > email me anytime. > > Love, > > > ~LoneStarRose~ > (~~) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 , I'm so sorry that I got your welcome notice out late....asleep at the wheel, so to speak. Big welcome to you and your sons! Sounds like you guys sure have had a rough go of it....I'm so very sorry. One illness we have in common is Irritable bowel syndrome. Not fun stuff! I've been taking donnatal for it, with minimal success. I tend to get diarrhea, and then the hemorrhoids come later. (wince) Have you found anything that helps you with it? I'm sorry to hear about your oldest son. Is he on a waiting list for a transplant, or can it be done? I have some advice for you here...if you need help, ask. If you are just having a really crummy day, vent frustrations. It sometimes is the only thing any of us can do with a situation. I'm glad that you're here (not glad for your illnesses that brought you) I'm sure that there are people on here with lots in common, and there are also a lot of young people with severe illnesses that may be able to reach out to your sons. Again, welcome, and I hope you are having a good day in Texas today. I bet it's hot!!!! I live in California and I'm just about to crawl into the freezer! Hugs, Hi Hello, My name is . I am 41 years old, and I have multiple health problems as do both my teenage boys (ages 15 and 16). Between the 3 of us, we suffer from Ehlers-Danlos Syndrome, Asthma and Allergies, Dysautonomia, Neurocardiogenic Syncope, Severe Narcolepsy with Cataplexy, Irritable Bowel Syndrome, Severe Osteoarthritis, Osteoporosis, Osteopenia, Spinal Stenosis, Spinal Spondilosis, and have many drug allergies and hypersensitivities. I have never been a healthy person, ever. It has taken me many years to seek out and find the right diagnoses for myself and my children, and the right help for each problem. We struggle and cope, and we are fighters.....we've had to be overcomers. We have loads of compassion and empathy for others who suffer from any type of chronic illness or pain, because we live it every day. As all of you know, we all have good days and bad days. My oldest son has a bad heart, and hasn't been able to attend public school since mid-December 2001. In the past month, he has had a heart cath and EP study during which his heart stopped twice and they had to cardio vent him (shock) twice to get his heart beat back. He currently has an implanted Loop Reveal Recorder to monitor all of his heart's functioning. This is the next step on the way to the implantation of a pacer and/or defibrillator. I have had 13 major surgeries for different reasons, including a cervical fusion at c-4, c-5, and c-7 (c-5 could not be salvaged and was removed). I now need a second fusion beneath the first, as those vertebrae have now crumbled and collapsed. I know all of this is long-winded, and I sure hope I don't offend or overwhelm anyone. I just wanted to try and cover all the main sicknesses my little family of 3 have. I know that others out there suffer much more than we do, and that we are really very blessed to be in as good a shape as we are, all things considered. This group was recommended to me by a dear, courageous friend. I look forward to getting to know all of you. Please feel welcome to email me anytime. Love, ~LoneStarRose~ (~~)Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 ) how are you doing today?! Great to see you here!!! How is doing?! Driving you crazy with the drums and gel today?! ) LOL I should be outside cleaning out the goats pens and stuff like that lol but it's just TOO hot, I'm stalling! You take care k ) ( *)= { ~~ ) Jmducky@... -Jessi " Too often we give children answers to remember rather than problems to solve. " -- Lewin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 welcome! I am so sorry you and your family have so incredibly much to deal with. I hope that you will find a safe place here and can just share about how you feel about all of this that goes on in your world. carol On Fri, 31 May 2002 20:34:49 -0500 " ~Lonestar Rose~ " <waltzacrosstexaswithme@...> writes: > Hello, > > My name is . I am 41 years old, and I have multiple health > problems as do both my teenage boys (ages 15 and 16). Between the 3 > of us, we suffer from Ehlers-Danlos Syndrome, Asthma and Allergies, > Dysautonomia, Neurocardiogenic Syncope, Severe Narcolepsy with > Cataplexy, Irritable Bowel Syndrome, Severe Osteoarthritis, > Osteoporosis, Osteopenia, Spinal Stenosis, Spinal Spondilosis, and > have many drug allergies and hypersensitivities. I have never been > a healthy person, ever. It has taken me many years to seek out and > find the right diagnoses for myself and my children, and the right > help for each problem. We struggle and cope, and we are > fighters.....we've had to be overcomers. We have loads of > compassion and empathy for others who suffer from any type of > chronic illness or pain, because we live it every day. As all of > you know, we all have good days and bad days. My oldest son has a > bad heart, and hasn't been able to attend public school since > mid-December 2001. In the past month, he has had a heart cath and > EP study during which his heart stopped twice and they had to cardio > vent him (shock) twice to get his heart beat back. He currently has > an implanted Loop Reveal Recorder to monitor all of his heart's > functioning. This is the next step on the way to the implantation > of a pacer and/or defibrillator. I have had 13 major surgeries for > different reasons, including a cervical fusion at c-4, c-5, and c-7 > (c-5 could not be salvaged and was removed). I now need a second > fusion beneath the first, as those vertebrae have now crumbled and > collapsed. I know all of this is long-winded, and I sure hope I > don't offend or overwhelm anyone. I just wanted to try and cover > all the main sicknesses my little family of 3 have. I know that > others out there suffer much more than we do, and that we are really > very blessed to be in as good a shape as we are, all things > considered. This group was recommended to me by a dear, courageous > friend. I look forward to getting to know all of you. Please feel > welcome to email me anytime. > > Love, > > > ~LoneStarRose~ > (~~)Get more from the Web. FREE MSN Explorer download : > http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 ette I too had a little trouble changing my email address for . If its the verification email which is the problem, i had this too. It didnt come till the next day, but when i got it i changed the email no problem, so you may have to wait a day. Hope things work out, Kate x Quote Link to comment Share on other sites More sharing options...
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