Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Sally, Glad you found us. I think that a good sense of humor should be mandatory with RP! I know it has helped me! Sorry to hear you have had a time with it. Too bad they didn't figure it out when you were ill the first time. Please keep posting it will be fun to get to know you! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 --- TheNavigator01@... wrote: > squeek , I was wondering if you got my e-mail the > other day? I'm not sure if > I'm sending them out right. I had a MRI done and > they did some other testing > but I didn't have any pain with thisl I hope all > works out for you, I'll keep > you in my prayers Your friend Sally > No, Sally, I did not get your e-mail, but that could be my computer. It is a pain in the butt at times. You don't have any pain with your back problems? If not, you are very fortunate! I have lots of back pain, but just try to ignore it as much as possible. The surgeon said it wasn't bad enough for him to operate yet, and that's fine with me. No more surgery for this old bag! Been there, done that, too many times. Hope things improve for you soon. I'm a tough cookie and I will be fine. Thanks for the prayers. I can always use more of those. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 In a message dated 5/1/02 6:15:02 AM Pacific Daylight Time, TheNavigator01@... writes: << LAUGHING is the BEST medicine any of us can take and overdosing is permitted >> Sally, I couldn't agree with you more. I think the laughing and the humor in this group is what has kept most of us going. Yes, we all need a good cry from time to time, but it is the laughter that cures the soul. I'm so glad you have found us and you just seem to fit right in. We are a very special bunch. Please continue to post and share your knowledge with us. Looking forward to getting to know you better hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 Sally Don't feel bad I have to write things down now too! Makes me wonder about getting old! I probably wont have any brains by then!LOL I am sending good thoughts and prayers that you will get to feeling better soon! Lots of love Glenda I try to keep a log as to who has what , at my age I have to write things down or I forget. I just wrote and I cann't sit here any longer. I'm sitting in a recliner but been at the computer for awhile reading up on T . M. and my stomach is just turning whoop-de-do's . Take care and I'll write later , hop you are feeling better Your friend Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Sally Sounds like you stay pretty busy! That is the best way I have found to not let the RP keep me down. Stay active and let it catch up to you if you can. Like you say if you over do you have to rest up a day or so and then go on from there. I was never a magnet for being ill but have had a lot of troubles with life in general. I was never sick until I got the RP. Guess that is why the Dr. was always telling me I didn't know how to act sick!LOL Glad you have a sense of humor. I think you have to have one with this darn ole RP! Take care and lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Hi Sally, and thanks for the good thoughts. My flare seems to be over for now-thank God! How are you doing? Take care! squeek --- TheNavigator01@... wrote: > Squeek and Sharon, > > Hope the 2 of you are doing okay ,know my wishes for > the best and my prayers > are for you both. Take it easy and do plenty of > resting and hope tomorrow > will be a better day for you both. > > Love ya Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi Sally, This main reason it took so long to get a dx was because I had a butt-head for a doctor. She would not listen to a word I said, and would not refer me to a rheumatologist because my blood work was normal. Hindsight tells me I should have walked out on her and found a new doctor, but I didn't. After three years of constant " eye infections " that she was treating me for, I demanded a referral to an opthalmologist. Everytime she would put me on steriod eye drops, my eyes would clear up, then when I came off the drops they would flare again. Anyway, the eye doctor said my eyes were in horrible shape. The eyeball itself was horribly swollen, dry as a bone, and this was not an infection. Anyway, to make a long story short, I changed doctors, he sent me to a rheumy, the rheumy mentioned RP at my very first visit, but did not get the dx until later. He was rebelling against me having it, I guess. He is a great doctor and I don't even want to think where I would be without him. How are you doing today? Hope you are going to have a wonderful weekend. I have a ton of stuff to do today, but the most fun part is going to visit with our 3 1/2 year old granddaughter and almost 9 month old grandson. They are good medicine for me! Then tomorrow, our 15 year old son is playing keyboard in all three Sunday morning services at church. NO, I don't go to all three even when he is playing.....just one! Talk to you later. Love, squeek --- TheNavigator01@... wrote: > Hi Squeek, > Too bad it took them so long to find out what you > had! Guess they were slower > then molasses, but then if this was so easy to dx. > we would be all set and > get treatments sooner.What did they dx your back > with? If it was RPthen how > did they dx you wiyh it 13 mos > ago???????????????????????????What happened to > the other 11 mqs.??????????????Guess my math is off > tonight, ha ha. LOL I > know it is the whitching hour. Time to go > night-night. Have a great weekend. > Love ya Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Sally, We are here for the whole person not just the person with the RP. We are here to laugh, cry, joke or just post. Feel free to post anything you like that is why they have a delete button. If we find something we don't like we can just delete it! Lots of love Glenda In fact I have never in 23 yrs. ever talked to anyone that has RP and it is so great to have this group and the ones on TM. I want to ask if I should post the things from the TM group that I send to RP? I was informed form someone on the TM group to put OT (off topic) on any jokes or info not pretainiing to TM. She told me that 1 % have nothing better to do then to slam those who put other stuff on. She loved the jokes and others have like some of the things from RP. No one has said anything to me so I thought you could let me know, I don't want to affend anybody. LOL You take care and I have you both on my prayer list and everyone else. I hope you had a great 4th.Love ya Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Thank you for letting me know about Lu! We'll all expect a report on your meeting with her. Lucky you! Love, squeek --- TheNavigator01@... wrote: > > Hi Squeek > > I heard from Lu the other day and she her > granddaughter from the > Dakato's visiting and she will be leaving on the > 27th. After that we plan on > meeting, will be great to actually talk to someone > with RP. I am looking > forward to that, we live an hour away from each > other. Take care and hope > you are doing fine. > > Love ya > Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Sally, Hope you get your questions answered. I wrote to Dr. Buckner one time with a short question and she replied the very next day. I was impressed! I know that and everyone else appreciates all the prayers that are going up for them right now.....so thanks! You take care, Sally, and have a wonderful weekend. I am going to be helping my husband put in new flooring all weekend. OUCH! Love, squeek --- TheNavigator01@... wrote: > > Hi Squeek, > > I thankyou for the e-mail, and I knew she > wasn't at the Mayo {LOL} and > I'll take you instead of Carol, ha, ha! Now maybe I > can get my question > answered by Dr. Buckner with all the research she > does. Wish I could and see > her but too far away, I live in N.C. > > Thanks for the update on and glad she > is doing so great. She > and all the others are still in my thoughts and > prayers. Hope you have a > great weekend. Don't get too tired filling in for > Heidi but you and the rest > are doing a great job! LOL > > Love ya > Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Sally Don't know what you sent. I didn't get it! If I can help you let me know. I got the first one fine. Lots of love Glenda BTW Maybe you can copy and paste what you want to send! Hi All again,Please let me know if you get this, I am new to PC and not good at sending messages. I am hoping this may help alot of us with the terrible pain that comes with RP. I found this on my TM list. Love yaSally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Good Morning Sally, I hope that Dr. Buckner does know the answer to your question. She seems like a really smart doctor to me. I agree with you about . Have to go get a card out in the mail to her today. She is one amazing lady. Still praying for Sharon, , Nina, Glenda's sister....and the list goes on and on. As to the medical marijuana....I have to agree with Lu (I think it was Lu anyway). I believe it is available in pill form right now, and from my understanding that is a much better way to control your dosage and the purity of what you would be taking. I have never smoked anything in my entire life, but thanks to the RP (I guess), I recently found out that my left lung is scarred. I wouldn't want to inhale anything foreign into my lungs! The legalization of marijuana can also open the doors for much abuse. One doctor here in OR recently lost his license for prescribing for hundreds of patients that he had never even seen! Just my opinion, but I think we would serioulsy have to consider damage to our lungs. I also think that there are better, more thoroughly tested alternatives. Have you tried Kadian? Fetanyl patches? Oxycontin? I'm truly, truly sorry that you are in such pain. Your doctors should definitely be working with you to get you on something that works. I believe there are things that work....but you need a doctor who is willing to offer them, and let you try them. Like I said, all this is just my opinion...but my lungs are too precious to take any kind of a chance with! Love you, Sally, and encourage you to talk very frankly with your doctor about your pain level. Insist that he try something until you find relief. Remember what Heidi says....they work for us...so make him start earning his pay. Love, squeek --- TheNavigator01@... wrote: > > Hi Squeek, > > I'll let you know how my e-mail goes with > Dr. Buckner. I have only > one question to ask her too. I sure hope she has the > answer. > > I guess all our prayers did the trick for > , it is so great to > hear she is doing so well. Now if Glenda's sister > does well and Sharon's > infectiion goes away that will be super. I am not > forgeting all the others > too, including you also will have better days soon. > I sure hope they legalize > Marijuana for medical reasons and PAIN ought to be > on the top of the list. > > I know there are so many people out there > that miss use pain meds but > Drs. need to understand that some of us really need > them. My Neuro gave me > 30 pills to last 1 year. LOL > > You have a good 1/2 of a weekend also.LOL > Take care and thanks for > writing back. > > Love ya Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Sally, are you saying that your doctor only gives you 30 pain pills per year? If thats so, I'd be searching for a new doctor yesterday! That's ridiculous! My doctor gets on my case because I let myself suffer too much and he encourages me to take more pain pills than I do. I know that is because he knows how careful I am with them.....but 30 pain pills per year is nonsense. As to the pill form of marijuana affecting the lungs, I don't think so, but I am not an expert. I just know that I have never had pneumonia, asthma, or smoked anything in my entire life, yet I come up with scars on my lungs. Too late for me to consider smoking anything!!! I know that pain can just be overwhelming at times, and can really get you down both physically and emotionally. Besides RP, I hit the jackpot with RA, OA, degenerative disc disease in my lumbar spine, mixed connective tissue disease........so I do know about pain and it sucks! Sally, please talk to your doctor and find out why he is not adequately addressing the pain issues that you have. Sounds as if you really need something badly. You take care of yourself! Love, squeek --- TheNavigator01@... wrote: > > Hi Squeek, > > I agree that there is abuse with medical > marijuana and it will spoil > it for the ones who really need it for true pain. It > would be interesting to > know if the pill form would hurt our lungs, if so > that is a huge side affect. > It would be super if they would come up with good > pain med and little side > affects huh? > > When I was talking about pain med for myself > it was for the times I > put too much stress on my arms or try to catch > myself from falling. When I > use my walker alot my arms get so tired and even the > high dose of Neurontin > doesn't help them, they get a trobbing pain. 30 > pills don't go far in 1 year > and I don't take pills only when I'm really in pain. > It would be nice to have > 3 refills for a whole year and that isn't much . > I am on 3,600mg of Neurontin for my tennis > elbow and it is wonerful. > It is a high dose and I could drop to 2,400 maybe > but not since I got TM, > they talk about the pain being so bad. The pain I > had when I first got RP in > 79 I don't want to have with TM. I know how bad the > pain is when I read what > you are all going through and I am so lucky that I > haven't had any flares now > and in 79 I only had that 1 major flare. My thoughts > and prayers go out to > all of you and hope you have a better day tomorrow > then today and hopefully > pain free. > > Thanks for your concern > Love ya > Sally > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Sally, I am the same way I thought it was just me. Now you are telling me that it is because I am the middle child? Wow now I have a good excuse.LOL I think I probably gave my folks the most gray hair too! Take care and thanks for cheering me up! Lots of Love Glenda I told her it would take my Dad and about 20 others for that duty. LOL After all these years she still cann't figure me out, she says I'm the one who gave her all the white hair!! That is not fair, she always told me to be myself! LOL I cann't help being the middle child and attract double like a magnet, right??? They say life is an adventure but I if I want that I would go to an amusement park. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Surgery for sister is tomorrow. I know the T & P are just great from this group! Don't ever know how I got along without you all! Take care and we did love it! Lots of love Glenda Glad you like the joke and I got to make you both laugh! LOL Oh, by the way it was free of charge and you didn't need a teaspoon full of sugar either. Ha, Ha. Hope your sister made out fine in the surgey and hope yow and family are doing okay too.My T & P ( thoughts and prayers ) are there for you and everyone else on the list.Love yaSally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Dear Marilyn, your welcome...your such a sweetheart and with all your going through the support is here for you as I know it is for me. You take care of YOU...Love, Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 > After thinking about all this for a while I began to > realize that > being depressed is something that all of us probably > have at times. > We have a disease that few know much about and that > in itself is > depressing. Plus, some of us have families who are > ill themselves > and can't deal with our problems, or don't want to. > It's so great > that we can count on this group to talk to because > each of us has > gone through some tough times and can relate. > Thanks everyone for > being here for me!!! > Love, Marilyn Marilyn, I agree totally with this! Everytime I flare I get depressed. It's like as soon as I think I'm finally getting better, I flare again. I am doing better at taking it one day at a time, but chronic pain can be very depressing all by itself. As to this group....some of have families that don't really want to hear or know what we are going through....or in my case that is what I think about some of my children. The group is a lifesaver for me. Just like reading 's letter this morning about how she feels....it could have been written by me. It gives me hope, strength, and courage to know that I am not the only one going through this cRaP. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Great letter, Sally! Thanks! squeek --- TheNavigator01@... wrote: > > Hello everyone, > > For the last few days I have been reading > about depression on both of > my groups; RP - Relapsing Polychondritis and TM; > Transverse Myilitis. I have > had both RP, first and now TM and it is not hard to > see the reason for our > depression at times. The anxiety we face with these > diseases are unbelievable > at times. It would be one thing if we all of got the > same symptoms and knew > what would happen but each of our situations are > different. If we had Dr.s > that understood what we are going through that would > be great. Some of us are > lucky and have those Dr.s and some are going through > trail and error with > getting the right dx and getting on meds that work > for us. It is hard to > understand why we got these rare diseases and even > harder to realize how much > our lives have changed now from the way we were. > > With the horrible pain alot of us suffer, > the exhaustion, our > concentration getting harder, and etc. no wonder we > get depressed. We wonder > when this will all end or get alot better so we can > get through our daily > lives easier. Our so called normal life has > disappeared for now and we have > to learn how to get by the best we can. We can only > hope that our family and > friends truely understand what we have to go through > each and every day. Most > of us are lucky in this but it is so sad when some > don't get the support they > need. I think everyone we know should walk a mile in > our shoes, especially > the Dr.s It is hard to discribe the feelings we have > in our bodies so the > Dr.s know what to do for us. > > When we get depressed and don't know where > to turn, go to the PC and > talk to your group for your answers and support. > They truly know how and what > you are going through and will do their best to > help you. It would be so > nice if we could leave our bodies when it gets so > bad and unbearable. It is > like being found gultiy of being sick and getting a > jail sentence. Some get > probation, suspended, months and years with parole > or life without parole. > Seems they ought to hand out striped PJ's when we > get our dx but the lucky > few are found innocense. We can however be found > gulity of another disease > when you lease exspect it and alot of us know that > too well. Think we can get > a stay of exacution more then once? LOL > > We need to do what is best for ourselves, no > matter what it takes : > pain, fatigue, sleeping, etc. and most of all > DEPRESSION. It is so funny that > both groups have been talking about it and by the > end of the day wondering if > we will be able to get up the next morning and do it > all over again. Our > bodies have terrible side affects from meds. and > deformidies while we have > emotional upheavals that can send us in a tailspin. > Guess we have to learn > when to eject, crash and burn or to pull out and > fly right. LOL So whatever > we can learn from our second families, put them to > use, if it doesn't work > then ask for more ideas. > > I know what I have learned in the past few > days and I hope I put the > words down right so they make some sense. It is > funny when you read the > postings and it is like looking into a mirror and > seeing yourselves in it, > huh? The one true thing we all know that seems to > help us is laughter, it is > FREE, very infectouis and the only side affect you > can get is a sore side > that aches when laughing. Oh and eyes with tears in > them if you have the > right dose! LOL > > Take care and hope you have a good week. We > can all look forward to > our cure that is around the corner, I keep praying I > find the right one. LOL > My thoughts and prayers go out to each and everyone > of you for a better > tomorrow and as pain free as can be. > > Love you all > Sally > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Hi Squeek Glad you liked it , someday this will be only a place for every thing but RP. Sure hope you are doing okay and it isn't too hot for you. Take care. Love ya Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Sally That is fun I am sure. To eat and try to talk at the same time. Sorry I made you laugh while you were eating. Life is definitely too short to take it all too seriously. Hope you had a great weekend. I had computer problems and couldn't get on line or read my posts. Ugh! Got it figured out after taking an air hose to it and it works like a charm now. Amazing how much dust builds up. I think it must have been from the remodeling job we are/were doing around here. Take care Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 --- TheNavigator01@... wrote: > > Hi Squeek > > Glad you liked it , someday this will be only a > place for every thing but RP. > Sure hope you are doing okay and it isn't too hot > for you. Take care. > > Love ya > Sally > Oh Sally, it has been way too hot for me. Having lived in Oregon for over 35 years, I have webs between my toes and just cannot take the heat! LOL I love the rain and gray clouds...call me weird, but thats just the way I am. Too much sun is depressing. Hope all is well with you and that you are having a great weekend. I haven't been online much as I am working on the house with my hubby. It's a never ending job I think. Take care, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 On the other hand > we ask ourselves " WHY > ME " ? If anyone finds the answer please let me know > what it is !!! It is > also said that God won't give us more then we can > handle but who says what is > too much?? > Sorry this is so long and hope it makes some sense > as sometimes I don't. LOL > > Love ya all > Sally Good Morning Sally, Your letter makes perfect sense! Thanks for sharing this with us. The " why me " question used to bother me too until I read a story about a person with a much more terrible disease than mine. I don't even remember what it was now, but I do remember how this person came to the place where they could say, " why NOT me? " I guess that is how I look at having this cRaP. As to your question about who decides when we have more than we can handle, I believe that is up to God. He knows me much, much better than I know myself. I can fool myself, but I cannot fool Him. You have a wonderful day, Sally, and thanks again for your post. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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