Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Donna, I hear ya about the planner full of appts. I finally got a PDA after seeing Alia using hers. Its a godsend, I could'nt live without it. Each family member is colorcoded and I can see exactly whos got an appt. Every day has at less one colored dot on it!!!! heres to healthy kids!! ( my stepsons birthday is May 5th too, he will be 23!) hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: ajaoky@... Reply- Subject: Re: Donna Date: Sat, 15 Apr 2006 13:09:25 EDT Thanks Helen, I have learned in life that if it is not one thing it is something else so take it all in stride. If it ain't me, it's one of the kids. Sometimes, I wonder what my pharmacy must think....lol. My planner is full of docs visits and sometimes I get confused who goes where and what day. YIKES! I am hoping to have all healthy for the boys birthdays (May 5) so we can go out of town. Thinking about taking them to Cedar Point in Ohio. Anyone been there??? Donna Hang tight, Hang tough Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Donna: Cedar Point is, in mine and my boys' opinions, the best amusement park in the world! That is, if you like roller coasters. The park is well set up and you don't roast like at Ky Kingdom and King's Island, as it is on a peninsula with the Sandusky bay on one side and Lake Erie on the other. There is constantly a breeze blowing, and hot days really aren't bad there. We have been 4 times now (we have relatives in the area) and we just love it. I am not much of a roller coaster rider but I do ride the milder rides (Max-Air is a MUST! Looks scary but is like being on a giant swing, in a way). I would go to the website (look it up on google) and check out the days that they are open in May, if that is when you are going. I think their days are limited in May. Glad to hear that you might get away for a trip! You deserve it!! Hope you have a great time. and Rob 16 Spondy On Sat, 15 Apr 2006 13:09:25 EDT ajaoky@... writes: Thanks Helen, I have learned in life that if it is not one thing it is something else so take it all in stride. If it ain't me, it's one of the kids. Sometimes, I wonder what my pharmacy must think....lol. My planner is full of docs visits and sometimes I get confused who goes where and what day. YIKES! I am hoping to have all healthy for the boys birthdays (May 5) so we can go out of town. Thinking about taking them to Cedar Point in Ohio. Anyone been there??? Donna Hang tight, Hang tough Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Alia and Helen.....I need a PDA! Tryin to keep it all on my pocket calendar in my purse is not working! LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Helen - Aren't PDA's the GREATEST invention EVER!?!?! How do we live without them?? Alia and Caroline, age 4, poly and uveitis ________________________________ From: [mailto: ] On Behalf Of Helen Burger Sent: Saturday, April 15, 2006 8:10 PM Subject: Re: Donna Donna, I hear ya about the planner full of appts. I finally got a PDA after seeing Alia using hers. Its a godsend, I could'nt live without it. Each family member is colorcoded and I can see exactly whos got an appt. Every day has at less one colored dot on it!!!! heres to healthy kids!! ( my stepsons birthday is May 5th too, he will be 23!) hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: ajaoky@... Reply- Subject: Re: Donna Date: Sat, 15 Apr 2006 13:09:25 EDT Thanks Helen, I have learned in life that if it is not one thing it is something else so take it all in stride. If it ain't me, it's one of the kids. Sometimes, I wonder what my pharmacy must think....lol. My planner is full of docs visits and sometimes I get confused who goes where and what day. YIKES! I am hoping to have all healthy for the boys birthdays (May 5) so we can go out of town. Thinking about taking them to Cedar Point in Ohio. Anyone been there??? Donna Hang tight, Hang tough Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 I love my PDA!! My friends laugh at me for being my age and having one (I got it at 19) but honestly with all my appointments its so much easier! I have the Tungstein E by Palm Pilot.. ajaoky@... wrote: Alia and Helen.....I need a PDA! Tryin to keep it all on my pocket calendar in my purse is not working! LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 It is comical to see Helen, , and I together. We are all pulling out our PDA's to check our schedules. I have the Tungsten E2 and LOVE it! Alia and Caroline, age 4. poly and Uveitis ________________________________ From: [mailto: ] On Behalf Of Salvucci Sent: Wednesday, April 19, 2006 1:29 PM Subject: Re: Donna I love my PDA!! My friends laugh at me for being my age and having one (I got it at 19) but honestly with all my appointments its so much easier! I have the Tungstein E by Palm Pilot.. ajaoky@... wrote: Alia and Helen.....I need a PDA! Tryin to keep it all on my pocket calendar in my purse is not working! LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 I have just a Z22 Palm, but love it. It doesn't have all the bells and whistles that the other girls have, but it downloads with my outlook program. This year I had 4 girls playing hockey on 4 different teams. Ice time is an awful thing to keep track of because it is never the same time on the same days.....so it was a godsend to me, and now I can't live without it! ________________________________ From: [mailto: ] On Behalf Of Alia.Pranke@... Sent: Wednesday, April 19, 2006 1:39 PM Subject: RE: Donna It is comical to see Helen, , and I together. We are all pulling out our PDA's to check our schedules. I have the Tungsten E2 and LOVE it! Alia and Caroline, age 4. poly and Uveitis ________________________________ From: [mailto: ] On Behalf Of Salvucci Sent: Wednesday, April 19, 2006 1:29 PM Subject: Re: Donna I love my PDA!! My friends laugh at me for being my age and having one (I got it at 19) but honestly with all my appointments its so much easier! I have the Tungstein E by Palm Pilot.. ajaoky@... wrote: Alia and Helen.....I need a PDA! Tryin to keep it all on my pocket calendar in my purse is not working! LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 I could'nt live without mine...its a Palm T/X In fact when Nick use to get his infusions at Childrens I was able to hook into their wireless router and go online. I could read and send emails while i was sitting there without having to lug my laptop with me. The expansion card with mine also fits into my sons digital camera, so i can move pictures, show off the kids pictures etc. I also have a file of all the pictures ive taken of Nicks swollen joints, rashes, strange skin eruptions etc so those are always with me to show doctors etc. I even saw software at target for a Rand mcnally interactive road map of the US on clearance for $7, I should have picked it up. Its Palm O/s compatable and would be so handy if I were trying to find my way somewhere and got lost. Its not like I have mapquest in my van!!! I think im going to go back for it.... Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: " Ray " <leslie@...> Reply- < > Subject: RE: Donna Date: Wed, 19 Apr 2006 14:59:06 -0400 I have just a Z22 Palm, but love it. It doesn't have all the bells and whistles that the other girls have, but it downloads with my outlook program. This year I had 4 girls playing hockey on 4 different teams. Ice time is an awful thing to keep track of because it is never the same time on the same days.....so it was a godsend to me, and now I can't live without it! ________________________________ From: [mailto: ] On Behalf Of Alia.Pranke@... Sent: Wednesday, April 19, 2006 1:39 PM Subject: RE: Donna It is comical to see Helen, , and I together. We are all pulling out our PDA's to check our schedules. I have the Tungsten E2 and LOVE it! Alia and Caroline, age 4. poly and Uveitis ________________________________ From: [mailto: ] On Behalf Of Salvucci Sent: Wednesday, April 19, 2006 1:29 PM Subject: Re: Donna I love my PDA!! My friends laugh at me for being my age and having one (I got it at 19) but honestly with all my appointments its so much easier! I have the Tungstein E by Palm Pilot.. ajaoky@... wrote: Alia and Helen.....I need a PDA! Tryin to keep it all on my pocket calendar in my purse is not working! LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 I In fact I just stood up and did 4 days worth of dishes after being in hopsital for 5 days (gallbladder) and off all RA meds during that time except what was going throug my IV YES I push myself and am very stubborn!!!! love, prayers and blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi gals, Donna I to cannot find your photos, where did they go??? Regina, 72 pounds is a hugh loss!!!!, and in only 5 months?!! That's great!! Remember, we all started at different weights, and will lose at different rates. Sure looks to me like you have gotten off to a great start!!! That's more than 14lbs a month which is fantastic!! You'll get to your goal in no time at this rate!!! ** Happy Dance** Dana -------------- Original message -------------- From: "rlrios3" <regina.rios@...> Hi! I recently read that you had reached your goal. That's great. I looked for your after pictures but can't find any. Did you post them? I'd love to see you as a size 3/4. Keep up the good work! My journey is not as quick as yours. I've lost 72 pounds since 2/17 and have a long way to go to reach my goal but feel better with each pound and inch that is gone. So to everyone out there that doesn't lose as quickly - hang in there. I know it will come off with time. Good luck to all.Regina337/265/150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 I want to thank all for sending their prayers! Keep them coming! My dad is still in ICU, but doing better. He is alert and responsive but still dealing with some memory loss. He does have a skull fracture and an epidural hematoma. He will continue to be monitored and hopefully will move to a regular room soon..again, thanks for all the thoughts and prayers! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi Donna, our thoughts and prayers are with you and we hope your dad is feeling better soon. Take care and Good Luck, Sharon, & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi Donna, our thoughts and prayers are with you and we hope your dad is feeling better soon. Take care and Good Luck, Sharon, & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 My dad is doin great! Thanks for asking and thanks to all for your prayers. Dad is in a regular room and if all goes well, will be home tomorrow! With many, many restrictions which will be difficult for him, like myself, he is a man who refuses to sit.... God Bless! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Thanks ....the lightheadedness I am having is driving me nutty. Some days it is there most of the day, other days I experience very little or none. The doc said my ears looked good but because I have had so much drainage for so long I am hoping the drainage has backed up and is causing the problem. However, I am also experiencing stomach issues...feeling hungry/ full, pain near the sternum and lack of appetite.......I am dealing with a lot of stress and looking for an outlet for that. Any ideas??? Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 , Thanks for asking...I am doing better for now and enjoying every good minute I have. Interestingly, I am not on any arthritis meds and if things stay as they are I may not go back on any....I have morning stiffness and some pain but overall it ain't so bad. I go the 22nd to the GI docs and Monday I see the rheumy who is likely to choke me for going off Celebrex...It is a difficult matter of weighing the lesser of 2 evils so I chose no meds.....I am still battling lightheadedness and hope to find an ear, nose, throat doc (any suggestions) who can see if it is my sinuses, ears, etc ....I am having some strange occurences with my ears.... About , he is well. I was with him yesterday and the best way to put it is, " is " na dnot to mention an inspiration to us all.....Something can be said for those of us with JRA and stubborn pride! Hugs! Donna Donna How are you feeling? How much pain are you in? Any updates on ? Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter! " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 It just so happens that I have a wonderful ear doc that is located in Louisville. His name is Dr. Burton Cohen. I believe the name of the practice is (or something very similar to) Kentuckiana ENT. I've been going to him since I was approx. 3 yrs. old. He gets booked up but does get cancellations that you may luck upon. I've seen a couple of the other doctors in the practice and have been happy with them all. There are a few office locations. Here is the address and telephone number of one. He is actually the only doctor during Sophie's 10 month diagnostic search that actually fought for her and finding out what the heck was going on. I absolutely LOVE him for that! He now asks about her each time I go in (which was actually this past Mon. due to fluid). 6420 Dutchmans Pkwy Ste 380 Louisville, KY 40205View Map <http://maps.citysearch.com/map/view/4275690> 5028948441 I can't tell you how happy I am to hear you have gotten some sort of relief from the intense and mysterious pain you were feeling. The doc might not be happy with you but we're talking about self preservation here. If that is what helps you then so be it! I hope it only continues to get better for you! So glad to hear of , as well. You are both my inspiration. I am in awe of your knowledge, strength, compassion, and determination. You all - this goes for you too, - are the only good things to have come from Sophie's illness. I am so glad to be able to say I know you three! (Truthfully, I can say that about the whole lot of you. I constantly refer to you as my " cyber family. " ) Ok, I need a tissue. Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter! " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie On 1/11/07, ajaoky@... <ajaoky@...> wrote: > > , Thanks for asking...I am doing better for now and enjoying every > good minute I have. Interestingly, I am not on any arthritis meds and if > things stay as they are I may not go back on any....I have morning stiffness > and some pain but overall it ain't so bad. I go the 22nd to the GI docs and > Monday I see the rheumy who is likely to choke me for going off > Celebrex...It is a difficult matter of weighing the lesser of 2 evils so I > chose no meds.....I am still battling lightheadedness and hope to find an > ear, nose, throat doc (any suggestions) who can see if it is my sinuses, > ears, etc ....I am having some strange occurences with my ears.... > About , he is well. I was with him yesterday and the best way to put > it is, " is " na dnot to mention an inspiration to us > all.....Something can be said for those of us with JRA and stubborn pride! > Hugs! > Donna > > > Donna > > How are you feeling? How much pain are you in? > > Any updates on ? > > > Professional Mom to: > Sophie (5) - pauci/panuveitis " JIA Super Fighter! " > Charlie (17 mos.) - " The Bird! " > http://www.caringbridge.org/visit/teamsophie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 thanks ! I will contatct them... Donna Donna > > How are you feeling? How much pain are you in? > > Any updates on ? > > > Professional Mom to: > Sophie (5) - pauci/panuveitis " JIA Super Fighter! " > Charlie (17 mos.) - " The Bird! " > http://www.caringbridge.org/visit/teamsophie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Yes, I am extrememly nervous now. Not sure who is worse, my mom or I. Considering the last 2 times a tube has passed through my mouth they almost lost me it is frightening.....Either way, either Tuesday or later it needs to be done. With the chronic cough and bronchitis it makes me a lil more leerie and my mother a whole lot scared....but honestly if it were not even present the worry would be the same for both she and I and my husband and kids as well....I hate this disease and all it puts on all our plates, kids and parents....I will keep all posted and please ask that you say a prayer as I make my decision...many, many thanks! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 They are not on the list but I will give a quick overview as others may find it interesting...... is a 17 yr old with JRA and asthma. She has had a rather rough road in her JRA days. I believe she was dx'd around age 8 but mom thinks it may have occurred much earlier. Last Fall she became ill and it seemed to be the normal Fall stuff with asthma being exacerbated. After slowly feeling better she began to worsen and by January was very ill. Mom took her to ER believing it was sinus, asthma crud. Social workers and chaplains were called in causing mom a bit of hysteria. Her sinuses (2 of them) were almost closed and had to be drilled and after sending sample to pathology it was determined she had contracted a flesh eating infection and it had settled in her sinuses. Currently, she is much better and improving greatly...... This crud just sets us up for so much more than anyone can imagine................ Hugs to all! DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Alright sis, I can not and will not talk you out of a tat...since I have a couple myself. However I do know that you have give it alot of thought especially with Tony and Matt being so opinionated, lol! I have been thinking of getting another one. One tat is a Guardian Angel and the other is Praying Hands, both on my back so I can show them when I want. Not many people know I have them...until now! ((((((HUGS))))) Carlaajaoky@... wrote: Ok...you guys are not talking me out of my tattoo, ok!!!!!!!! LOL As some of you know I made a pact with my kids that once I had beaten cancer we would get tattoos in honor of my fight(s). I am currently looking at one that has a face of a tiger in the shape of a butterfly. This shows my multiple sides......who knows I may chicken out.....I just was informed I will need antibiotics first so , check with Robs docs too..... happy tattooing! Donna See what's free at AOL.com. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Boxing gloves have been suggested alot. Pete said he even had a vision that was my tattoo. Said one glove represented me and my fight(s) and the other my family and supporters. I like this idea alot! DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Beth, EYE of the Tiger Great Visual lololol. 2 Boxing gloves DONNA I know where You can put the TATOOOOOOOO. lolololol. Dang I amd laughing here. 2 boxing gloves and eye of the Tiger. TONY will have the handcuffs on you lololol Donna. RobbinSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Donna, Pete has a good eye. Let seeeee Boxing gloves good idea. With a Heart in the middle at the bottom. Either written in the Heart you could put >Life< Or you could have KGAT only we know what that means. RobbinSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 donna; Just my 2 cents, but I see boxing gloves..maybe with the words "Eye of the Tiger". You have more guts than I. Sending prayers & happy thoughts, Beth :-) hey carla and tree so cool to see you guys posting!!!!! Welcome back my fellow FACES /AJAO-KY buds. I am still debating what tattoo I want but lots of folks have offered lots of suggestions so throw some my way! Did you take antibiotics first??? For those wondering what we are discussing.. .FACES or FACING ARTHRITIS with COMPASSION, ENCOURAGEMENT and SUPPORT was a support group established by a few in Louisville several years ago. Later we became AJAO-KY and now we are revamping again and will be the Juvenile Arthritis Alliance of KY (or so I think). I was fortunate to meet some wonderful friends who have been the best form of support in these endeavors. Carla, my lil spunky sis and Tree , my left hand on many, many occasions. Again....welcome back and we all need to chat soon. We have a meeting May 19th planned and I will get the details to ya soon! Donna See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
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