Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Dear Leanne, it is very nice to meet you. My name is Sue, a/k/a Sue #2. I am glad that you have joined the group and I think that it will be very helpful for you, as it has been for me. I would be lost without this incredible site. I wanted to tell you that I did indeed have a problem with endometriosis and a bad case. I had several minor surgeries because of it. It was a real problem when I was a teenager. At the age of 30, I had a complete hysterectomy. I am now 36 with two wonderful boys. A lot of woman here on the site have had problems with this too. Before I had children, I had the laser surgery to remove a lot of it and was soon pregnant afterwards. I did the same thing again when I conceived for my second child, and then made the decision to have no more children and had my hysto. My Stills seem to set in when I was around 32, but I was not diagnosed until I was 34. It will be very nice to talk some more Leanne, and I look forward to getting to know you better. Sincerely, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Dear Leanne, My daughter doesn't have PA and she hasn't had to endure anything like an amputation, but she has been ill since the age of 14. Up to that point in her life, she was a typical teenager and constantly on the move. On her 14th Christmas we got her a pair of new roller blades and we thought she had come down with the flu. It turned out she never did wear them or roller-skate again. She has a really bad case of fibromyalgia. I took her to all the top specialists in our state and finally ended up at an All Children's Hospital. For a while, they thought she had a heart condition and she had to wear a heart monitor for about a week, due to her chronic chest pain. It turned out the muscles around her ribs and sternum were inflamed. We weren't happy with the diagnosis but of course we were thrilled it wasn't anything " fatal " . The problem is like PA, it is chronic and something she deals with everyday. She is now 21 and looking back I can tell it has made her more compassionate, but she has given up so much in the process. We had so much trouble with the school system that she eventually dropped out at the age of 16 and got her GED. Before we got that desperate we tried home schooling, tutoring, phone class, internet class and nothing really worked since she just became more and more isolated. Once she got her GED she immediately enrolled in our local community college at the age of 16, and it worked really well. In high school, the only thing they cared about was attendance and since she had a hard time getting up in the morning they constantly were threatening to fail her. It was so frustrating since she was a straight A student and they knew her health condition since we had all the forms filled out from our family doctor. It basically turned out that they simply couldn't make accommodations for her problems and I know I had a legal case, but at the time that was the last thing my daughter wanted. She recently just moved out of the house and is finishing up her last years at the major university about 40 minutes from home. We got her a nice apartment so she could take her dog and cats. (By the way, the best thing I did was buy her a dog that was all hers. They have been bonded together since he moved in and I don't think she would have made it through that rough time without him.) It has been rough since there have been times when she is in too much pain to even get her own groceries. My husband and I just find a way to drive over and do it for her. She has only been out of the house about 2 months now I guess, and it has been rough on all of us. I know in the long run it will be the best thing for her since living on your own is part of growing up and you need it to find your independence. My heart breaks for your son. It is hard to face PA at any ago, but it is just so wrong when children are sick. Society doesn't expect them to be ill and neither do their friends. The best thing your son has going for him is you. It sounds like you are a wonderful Mom and will do what ever it takes to help him find his way. It's so important that he doesn't feel " weird " for being sick, and what ever you can do to keep things as normal as possible will help. Please feel free to write me anytime. I hope for Owens's sake that the worst is over with and now that they know what they are dealing with he will get better with the right medication. Some of the new drugs on the market are just wonderful. Take care and don't lose hope. It sounds like he is in the middle of a horrible flare and surely it can't go on forever. Don't forget to take care of your self and your husband. It's real easy to lose sight of everything else when your child is ill. I think I did it all at one point in the past years..lol. You are in our prayers. Love, Fran ----Original Message----- From: taschic6 [mailto:cookie6@...] Sent: Sunday, September 12, 2004 12:55 AM Subject: [ ] leanne Marti, What is it about 14? And yes, we've weighed up the Cancer scare versus PA. For about the week before Owen's surgery, we went to a very dark place.It was like a concrete truck reversed onto our heads.After surgery they said that they think they got it all.He didn't even have his stitches out before another toe started to swell. Now both big toes and 4 others are up, plus the Lthumb and a spot on his spine.Where does it stop? Well, Owen knows about this group, and I thought he'd collapse with embarassment, he didn't. He asked me later,if he felt like it could he have a look and chat.Now, that's great. On a positive, through this ordeal,I've met the most witty,loving,wonderful people. People we thought were friends avoided us, they didn't know what to say-so they said nothing.Others,who i didn't really know, have gone out of their way to be there.It's like the group, what a breathing space itis to have a group of 'been there, done that'people who care. It makes you think how truly lucky I am. The strength of character shows. i often wonder, if it's this aggressive now, will it always be this way for Owen? are his flare-ups going to 'eat him alive'? Most thankful Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 -Hi Leeane, I'm trying to refrain from being sarcastic about your docs because they obviously made an honest mistake and did what they thought was right...but ...duh...I guess they did get all the cancer since there wasn't any there to start with... I don't think your son's pa will be this aggressive for the rest of his life. Often some of the very first flares are the worst ever especially since people are put on meds afterwards. Many people report the first flare in any joint seems to be the worst and that joint may flare again later but not quite so badly. My own experince is I have periods that are better . I've never really been 100% pain free but the pain and swelling are definietly up and down. when you talk about he extent of your son's current flare it makes me wonder if short term (key word short) prednisone would help calm it down. Many docs believe that the damage takes place due to the inflmmation and this might help prevent further permanent damage. anyway...your rheum is the best judge of this. I'm so glad our group is helpful and your son is encouraged too.. Best, Marti -- In , " taschic6 " <cookie6@e...> wrote: > Marti, > What is it about 14? And yes, we've weighed up the Cancer scare > versus PA. For about the week before Owen's surgery, we went to a > very dark place.It was like a concrete truck reversed onto our > heads.After surgery they said that they think they got it all.He > didn't even have his stitches out before another toe started to swell. > Now both big toes and 4 others are up, plus the Lthumb and a spot on > his spine.Where does it stop? > Well, Owen knows about this group, and I thought he'd collapse > with embarassment, he didn't. He asked me later,if he felt like it > could he have a look and chat.Now, that's great. > On a positive, through this ordeal,I've met the most > witty,loving,wonderful people. People we thought were friends avoided > us, they didn't know what to say-so they said nothing.Others,who i > didn't really know, have gone out of their way to be there.It's like > the group, what a breathing space itis to have a group of 'been > there, done that'people who care. It makes you think how truly lucky > I am. The strength of character shows. > i often wonder, if it's this aggressive now, will it always be > this way for Owen? are his flare-ups going to 'eat him alive'? > > Most thankful > Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi Leanne, It's good that Owen wants to get involved. He might have some questions of his own to ask. In fact he has already been through enough to be able to give advice never mind get it. It will be good for him to see that having this doesn't mean he won't be able to do things. Just might have to do them a little differently at times but it sounds like he will be strong enough to cope with it...........that he has that strength of character that you mentioned. Hopefully whatever meds he ends up taking will calm things down. Hang on in there. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 In a message dated 9/12/2004 12:16:55 PM Eastern Standard Time, fran@... writes: In high school, the only thing they cared about was attendance and since she had a hard time getting up in the morning they constantly were threatening to fail her. Fran, That is so sad that your daughter had to go through all of this at such an early age. I know what fibro feels like and it is definitely hard to get out of bed some days. I am happy that your daughter was able to become more independent with such a horrible condition. How old is she now. I have two girls, 19 and 24 and luckily they are both pretty healthy. The youngest just started developing terrible skin peeling on her hands and feet and the derm said it was eczema and gave her a strong cortisone ointment. I would like to know if this is related to psoriasis now because naturally we don't want our children to suffer like we do. Once again Fran, I have to give you credit. You are an asset to this board and I hope your daughter knows what a wonderful person you are. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Hi Leanne It is good when you get someone that knows what they are talking about – it helps immensely. I am just curious to know, does she advocate the magnesium as a sweet curbing supplement. I have never heard that, but would be willing to give it a try. I have used chromium picolinate in the past and had good success, but I am just bad at taking pills regularly. Nx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Hi Leanne It is good when you get someone that knows what they are talking about – it helps immensely. I am just curious to know, does she advocate the magnesium as a sweet curbing supplement. I have never heard that, but would be willing to give it a try. I have used chromium picolinate in the past and had good success, but I am just bad at taking pills regularly. Nx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Nic We didn't discuss any other sweet things apart from chocolate so I don't know. I'll ask her next time but in the meantime I'll ask Cath Bowen if she'd like to do some research for us. Cath loves searching for new information. Leanne > > Hi Leanne > > It is good when you get someone that knows what they are talking about > – it helps immensely. I am just curious to know, does she advocate > the magnesium as a sweet curbing supplement. I have never heard that, > but would be willing to give it a try. I have used chromium picolinate > in the past and had good success, but I am just bad at taking pills > regularly. > > > > Nx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Nic We didn't discuss any other sweet things apart from chocolate so I don't know. I'll ask her next time but in the meantime I'll ask Cath Bowen if she'd like to do some research for us. Cath loves searching for new information. Leanne > > Hi Leanne > > It is good when you get someone that knows what they are talking about > – it helps immensely. I am just curious to know, does she advocate > the magnesium as a sweet curbing supplement. I have never heard that, > but would be willing to give it a try. I have used chromium picolinate > in the past and had good success, but I am just bad at taking pills > regularly. > > > > Nx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Nic We didn't discuss any other sweet things apart from chocolate so I don't know. I'll ask her next time but in the meantime I'll ask Cath Bowen if she'd like to do some research for us. Cath loves searching for new information. Leanne > > Hi Leanne > > It is good when you get someone that knows what they are talking about > – it helps immensely. I am just curious to know, does she advocate > the magnesium as a sweet curbing supplement. I have never heard that, > but would be willing to give it a try. I have used chromium picolinate > in the past and had good success, but I am just bad at taking pills > regularly. > > > > Nx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi Leanne, I wonder about Ethan's operation.I wish you and your son is ok. Please write us when you have time. PINAR Quote Link to comment Share on other sites More sharing options...
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