Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Pina Colada's it is, BIG ONES, REALLY BIG ONES. thanks claudia love ya dawn RCColloran@... wrote: Darn it anyway Dawn. I'd be mad too.!! You have every right to be upset and I would definately report the woman. Go to the top. Then demand that this test be done and done at an appropreate time. This test is important for . You pay them and you should get respect and the proper treatment. Just my 2 cents. Please let us know what happens. Hey..... you want to go with me to Heidi's for Pina Coladas????? I bet there will be a bunch of us there this week. LOL I'm thinking of you Dawn.... Know I love ya bunches. Take a deep breath and try to relax... you don't need the stress either. hugs to youDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Dear , thinking and praying for you every day, but you know it takes time. Sending positive thoughts to you, too. Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 In a message dated 9/3/02 10:02:19 AM Pacific Daylight Time, dmorgan26347@... writes: << claudia the only thing I see your forgetting is to remind people to update the info on the medic alert. you know like changes in meds, drs. address, phone etc. hope your doing great dawn >> Oh Dawn, what would i do without you???? LOL YOu do such a great job of nagging too. YOu should be proud.!!! ) We do make a great team.... Thanks for the reminder. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 claudia the only thing I see your forgetting is to remind people to update the info on the medic alert. you know like changes in meds, drs. address, phone etc. hope your doing great dawn RCColloran@... wrote: << What is the hardest part in dealing with our loved ones RP ?? What could the do to help us to help them ??>>Heidi, thank you for resending this. I know my family didn't answer it and I am going to get them all to do it. Hopefully it will be soon. LOL All of this information will help us. I am also sending in my exercise money today. Or should I say Non-exercise money. LOL I go next monday to cardiac rehab for an interview and mini physical, so if I start that, I will be exercising on a reg basis. I haven't gotten the okay to start the treadmill here yet, but hopefully next week. Let's meet that challenge of making more than we did the last time. Thanks Marilyn for starting this. It really helps the Foundation. Oh and while I'm on a roll, some of you might have received a notice from me that your donation to the Foundation is due in Sept. I want to thank all of you who have continued to support us and to those that will be sending your part, thank you ahead of time. It all adds up and we are hoping to be able to give more this year towards research for RP. If anyone else would like to make a donation to the RP Foundation ( it is separate from this group), you may make your check or money order out to "RP Foundation" and send it to: RP Foundationc/o Colloran775 Bounty PlaceManteca, CA 95337We are a non profit org. and your donation will be a tax write off. If you wish to join the Foundation, all we ask is a $15 a year donation. You may also make a donation at any time in honor of someone. It may be for a birthday, anniversary, I memory of someone you have lost or just because. Just let me know when you send the donation if you want it in honor of someone. This is also a very nice way for your family and friends to honor you on your Birthday, Anniversary, Christmas or just because you are a wonderful person. Be sure to order your Medic Alert pendants or bracelets. It could save your life. Get those annual bone density tests, mammograms, eye exams, dental exams, hearing exams and any other exam you may need if they are due. I know I'm forgetting something, but give me time, this ol brain will kick in soon. Aren't you glad I'm Baaccckk!!! LOL I love you all. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Sounds good to me, yum yum, wonder if heidi will make us a peanut butter pie. its great when its hot outside and the pie is nice and cold. I can always shop on a full tummy, gives me energy. take care of yourself love ya dawn RCColloran@... wrote: << SOUNDS GOOD TO ME, LETS ALL GO TO CALIF TO CLAUDIA AND GO SHOPPING, OPPS I MEAN FOR SOME RETAIL THEARPYDAWN >>Oh Dawn, You are ALL welcome here any time. What fun we could have. Marilyn and Heidi could just bake their little hearts out. LOL AND we could eat it all. LOL Sounds like fun huh? We could do retail therapy while they are in the kitchen. LOL hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 LOl Oh No Dawn you wont be able to go for Therapy after Marilyn and I get true Baking. LOL And NO I AINT MAKING A peanut butter pie either !!! Yucky Pfuuuy !!! Sounds good to me, yum yum, wonder if heidi will make us a peanut butter pie. its great when its hot outside and the pie is nice and cold. I can always shop on a full tummy, gives me energy. take care of yourself love ya dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 CLAUDIA WAY TO GO LADY. HAVE AT IT. DAWN RCColloran@... wrote: LEARN HOW TO SHRUG, IN OTHER WORDS JUST DUMP IT OFF. I TRY REAL HARD NOT TO LET TOO MUCH GET TO ME. NOW WHEN I DO LOOSE IT, I REALLY LOOSE IT BIG TIME. DAWN Oh Dawn, I've shrugged SO much that my shoulders are stuck in my ears. LOL I think that with age I'm just letting people have it right and left and then I feel guilty. LOL I'm so tired right now that I don't think I have the energy physically or mentally to fight any more fights with drs., insurance, etc. Although I think my latest battles have been winners. Yippee!! will let you know later. Love yaclaudia DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 i have asked the PCP to take over, but he says he can't because he referred me to the rheumy, and would loose his licsence if he starts treating me for the RP, over what the rheumy says, I don't understand that one. Dawn, i don't understand this at all. I have never heard of this. I think I would call the medical board and see if it's true. I really don't think it is. I have had my PCP treat me by over riding another dr. Please check it out. I'm going to check too. I thiink they just don't want the responsibility of treating you. just my opinion. hugs' claudia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 claudia your probably right, but i would hate to think that, because so far i like the PCP, and if he starts lieing to me, then i'm really up a creek without a paddle. dawn Well Dawn, then I won't check. LOL Leave well enough alone I guess. I just want you treated correctly and it doesn't sound like you are. I will have to start worrying about you too. Okay.....Squeek and Glenda.. put Dawn on the list. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 Please tell me how to become a member of the foundation SHERRIE IN MICHIGAN -- Re: Thank you all for the welcome--We greatly appreciate it! , thanks for letting us get to know you a bit better. I'm so glad that you found us and that we can help you and Bill. One rule in the group.... PLEASE don't ever hesitate to ask a question or to vent. We are here for YOU as much as for Bill. The shock at first is the worse, I hope both of your stress levels go down a bit and you have a wonderful rest of the weekend. Sending you both love, hugs and prayers DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 How affection do you have blood work? I havent had any for5 months. SHERRIE -- Re: Re:Meeting new people/ vitamins I can only tell you from my own experience on vitamins. I was told to take a multiple vitamin and calcium. My body just has a really hard time with any medication. I do take Tums for the calcium and can't for some reason tolerate the vitamins. I was taken off Vit E when they put me on coumadin. I do know that we don't want to build up our immune system, we want to suppress it. Each of us is different and it is so important to keep our bodies in the best of shape with exercise and vitamins. Please check with your dr and if vitamins are added, PLEASE take them on time, every day or Heidi will come looking for you. LOL I have my blood checked every so often and the do check for calcium and potassium and other minerals to see that I'm getting enough. hugs Can anyone recommend what kind of vitamins should be taken. I am not on any right now, just calcium along with the pred. Has anyone tried any other alternative medications, along with the traditional of course. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 Thanks we are going away this weekend and just do nothing SHERRIE -- Re: Happy Anniversary Sherrie Sherrie, I hope you have a wonderful 27th Annivesary and many more to come. hugs DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 We go to court Jan 13th on our grandson who is 4. It broke my heart to read your story. WE as in grand parents have to just let the court do there thing, they are sooooo slow and every minute of every day our grandchildren are suffering. They have us to love them but that bad SPRUM that made our percious babies always comes back for what???? They dont love them. I will pray for them GOOD luck sherrie -- update Well, last night I finished all my shopping. Will go tomorrow for stocking stuffers and will be ALL done. Yippee!!! Tomorrow I have my appt with my new rheumy. Please keep your fingers crossed. LOL Today was 's 25th Birthday. We had a few of her friends over for pizza and cake and it was really nice. It was the only nice part of the day. 's car broke down today out of town and she had to be towed home. is really sick today and she had to be driven home from work. She works at the HMO that I am going to now. They had her lying down for most of the afternoon and had the drs. look at her but they didn't do any tests or anything and said it must be a virus. She has had this before and I don't believe it is a virus. Dizzy, weak, pass out feeling, naueated and then when it is over she is really tired. picked up Makeila from her dads and they came over for 's Birthday. Makeila needed some help in the bathroom and Rich went in to help her pull up her pants and he noticed her bottom was all welted and bruised and red marks where blood vessels had broke. He called in and she came unglued. They had told her they spanked Makeilat when she picked her up and on the way home she told it was the worse spanking ever. called the dr and they called CPS and the police. She took her in and the police met her there. The dr was really upset. This spanking was from 11am this morning and at 7pm it was looking this bad. He spanks her every day she has a bad day at school. She is in Kindergarden and for heaven sakes, they all have bad days. She got it 3 time last week. Well the police went and talked to him and told him not to do it again and then they told that she had to keep sending her there every day after school. Looks like we will be going back to court. UGHHH... I wish I could give him a good dose of his own medicine. The police talked to Makeila and she kept asking if she would go to jail if she told on her daddy. She told Rich that when she is at her daddys, she thinks of Rich and I all the time and wants to be with us. Oh how my heart breaks. She has been through so much in her short 5 years. Please say a special little prayer for this little girl and her mom who is trying so hard to be strong. She kept telling not to cry for her because she was going to be okay. I appreicate all this group does for me. Thanks for listening to a Grammy vent about something besides RP. hugs DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 YOU ARE SO KIND. THANK YOU!!!!!!!!! SHERRIE -- Re: Re: [Rpolychondritis Sherrie,/ metho Sherri, hang in there girlfriend. The antibiotic will probably take a goo 48 hours to start working. When I had the same thing, it took FOREVER. LOl Not really, but it sure seemed like it. It will kick in and you will feel better. Just rest and drink lots of liquids and rest some more. It is so hard for spouses and family members to see us sick all the time. I think they do get distant. One because they feel helpless, two, they get scared, and three I would imagin it does get old seeing us sick. This is just my opinion. Rich is VERY supportive, but he does go through all of these stages. Just as we do. We go through guilt, depression, just want to give up, angery,... you name it.. So I would imagin the same goes for them. I think once you are well and can get started on the metho, you will soon see a change. Just know we are hear for you. YOu rest and take care and let us know how you are.hugs DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 I used to have leg pain at nite. two years ago i had a sleep test. i have restless leg syndrome i felt pain and a need to get up and walk off the pain couldn't stand to have knees touch. now i take mirapex and two apnea every mite , it goes a long with sleep apnea. i sleep much better now... i do have a question for you they have up my PRED for this ear infection for four days and if i get four hours of sleep i am lucky is this normal????? MIRAPEX is a drug that tells your brain to relax your muscles in your legs its a small dose ( used for Parkinson diease). SHERRIE -- Re: Sally Sally, I'm so glad you have found something to ease your pain. I am a firm believer that no one should have to endure constant pain. I too take Neurontin. I am on 1200mg a day and will probably increase it again soon. It has done wonders for my fibro pain. (and some others I'm sure )LOL I take ultram as needed and it too helps. I have the constant leg pain, somewhat like what you descirbed, but it is painful and nothing seems to take it away. Mostly at night. I'm sure my coumadin will even out. The clinic is keeping close tabs on it. I feel I will get everything under control this year!!! YEAH!! It will be a good year for me. Just a matter of adjusting a few things. I'm hoping my weight gain will turn into weight loss by lowering my pred. LOL I have gained 50 pounds since taking the pred. This is a goal I'm sure will be slow, but one day maybe I'll be able to get into some old clothes. LOL Thanks for the post and hope you can get everything taken care of and no more damage will be done. hugs There was no pain but a constant tight feeling that never went away,especially at night, like someone has them in a vice.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 YES AND NO LOLSHERRIE -- Re: Sherrie Sherrie, Yes, I think the lack of sleep is coming from the increased dose of Pred. On my sleep study, they didn't find any restless leg. I have had 4 done already and will have the 5th one this month. They keep finding more stuff wrong. LOL NO MORE!! CONGRATULATIONS!!!!! (On ordering your medic alert bracelet) See everyone.... I got to another one. Who's next??? Wish I had prizes for you all. Job well done Sherrie ( or did you just hear the horror stories about my nagging? ) LOL hugs DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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