Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Dawn, Yes, I can openly admit (to this group only) that there have been times when I've thought, "Just how much longer do I think I can really go on like this?" It is certainly not the way I planned for things to work out. I've always believed that things work out okay in the end. This just isn't the end yet. My son, who is now 33, fell asleep at the wheel in Aug. 1993, rolled his truck, and became a paraplegic. He went from 6'4" to 4'6" when he got into his wheelchair (his little joke, not mine). However, he does everything but walk (lives independently, coaches girls' softball, can jet ski and snow ski like a pro, raises Australian Blue Healers, etc.). This fall, he got a pressure sore on his rear end that turned into a tunneling wound and was scheduled for surgery Dec. 6. That surgery didn't go so well and he's had two others since (Dec. 29 and this past Monday). By the time this is all over with, he will have been flat on his back for over two months. Rehab is gonna be a real bear to get him back into shape before softball season starts again. He's in pain a lot of the time where he can feel (he's paralyzed below the chest line) but his one concern throughout all of this is that my Mom died on Dec 5 (the night before his first surgery) and he couldn't be there as one of the pall bearers to help carry her. He's my inspiration. This is his life and he just deals with it. I don't know how. But I've learned so much from him. Maybe it was God's way of preparing me for this cRaP. I have no idea what he's preparing for me next, but then, it's not the end yet, is it? dawn hi guys just checking in. Not feeling the best the last few days, not really flaring, just hurting, like crazy. Both ears hurt, and will turn red occasionaly and just an all over feeling of the blahs, can't sleep, joints hurt, I don't understand it. I guess it the winter blah's. Just feel kind of down and under the weather. Tell me do you guys ever feel like just giving up. Thats how I feel, just so tired of the meds, and the side effects and just fighting the disease, just don't really care anymore. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 In a message dated 1/23/02 2:58:40 PM Pacific Standard Time, linetech@... writes: << Why bother resting, taking your meds on time & all the other stuff if you still feel like shit & nothing is working. I am so disgusted & depressed. I know there is no fast cure all for this but gee whiz what do you gotta do to feel better. At least there is a bright spot & that is that we're not in this alone. >> Sue, I feel the same way too at times, but think how BAD we would feel if we didn't do all the stuff we are suppose to. LOL Yes it is a good thing to know that we are not alone in this battle. With all of us working together, I'm sure we can help find a cure for this RP. The Foundation is working as hard as it can to make this happen. The newsletter for the Foundation is coming out soon. Mike is doing a wonderful job on it. PLEASE, for all of you who haven't donated to the Foundation, please consider doing so. This will help us to fund research and find a cure. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 In a message dated 1/23/02 9:37:20 AM Pacific Standard Time, mmjw3@... writes: << It helps me when I start feeling this way, to try to stop focusing on fighting the disease and to focus on giving to myself in whatever way I can, including asking my friends to help me out. This might be taking me to lunch, coming over and sitting with me while I cry, or anything else. Just don't let yourself isolate. It can be really humbling to do this, and hard, but I find that it makes a huge difference when I do it. >> , Thanks for the great advise. I know it is really hard for me to ask for help from anyone, including my family. Just stubborn I guess. When I finally do, it feels great and takes a lot of burden off of me. Hopefully I will learn to do this more. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 In a message dated 1/23/02 6:48:45 AM Pacific Standard Time, dmorgan26347@... writes: << Tell me do you guys ever feel like just giving up. Thats how I feel, just so tired of the meds, and the side effects and just fighting the disease, just don't really care anymore. >> Dawn, I don't think we would be normal if we didn't feel that way at times ( and sometimes it can last for a long time with me). Not being able to do what we want is the major set back for me. That is depressing. Finding the right dr. and the right combination of medications really helps alot. You vent, rant, rave and cry all you want to us. That is what we are all here for and in return, we will do the same. It really helps to get it out. Please don't hesitate to post your feelings. I'm keeping you in my thoughts and hope that you start to feel better each day. Sending you lots of cheerful hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Dawn, You hang in there!!!!! I think we all feel like you do some time or another... We are all in this together so if you need a shoulder just email us. We are all here for YOU!!!!! --- Dawn wrote: > > hi guys > > just checking in. Not feeling the best the last few > days, not really flaring, just hurting, like crazy. > > Both ears hurt, and will turn red occasionaly and > just an all over feeling of the blahs, can't sleep, > joints hurt, I don't understand it. I guess it the > winter blah's. Just feel kind of down and under > the weather. Tell me do you guys ever feel like > just giving up. Thats how I feel, just so tired of > the meds, and the side effects and just fighting the > disease, just don't really care anymore. > > dawn > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Oh Dawn, my heart goes out to you. I'm sorry we got cut off on MSN the other day. Gosh I get so mad at this darn RP and what it does to us. You have a horendous amount of stress right now. I'm not one to give advise on how to handle that. LOL you know I'm the worry wart. Just know that we are all here for you, whenever you need us. There is always someone to talk to. Get on line in the middle of the nite, someone is usually always here. If you need anything let us know. We love you and we do feel helpless too for not being able to wave the magic wand. I hope today is better, Rest when you can and remember to always count on us. hugs and more hugs I am saying extra prayers for you and your family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 hi everyone I thought after yesterday I should check in. Had a really bad night. did not go to bed till 3 or 4 am. partly because of the bad news i was given yesterday. My brother in law(billy) is not doing so well. And my best friends' husband that already has colon cancer, and just had surgery for that found out that the cancer as spread to his liver. My mom was taken to hosp for test because they think she has pheumonia, so it really has not been a good two or three days. Like i said yesterday just don't feel good and now all of this really has me down and upset. i i do appreciate all of the care and concern it has helped a lot, i am just so tired and down i just don't feel like even moving at this point. don't know how to handle all of the stress right now. always remember everyone that if no one ever tell you they love and care, I am telling you that i will care and love ya all dawn carol applin wrote: Dawn, You hang in there!!!!! I think we all feel likeyou do some time or another...We are all in this together so if you need a shoulderjust email us. We are all here for YOU!!!!!--- Dawn wrote:> > hi guys> > just checking in. Not feeling the best the last few> days, not really flaring, just hurting, like crazy.> > Both ears hurt, and will turn red occasionaly and> just an all over feeling of the blahs, can't sleep,> joints hurt, I don't understand it. I guess it the> winter blah's. Just feel kind of down and under> the weather. Tell me do you guys ever feel like> just giving up. Thats how I feel, just so tired of> the meds, and the side effects and just fighting the> disease, just don't really care anymore.> > dawn> > > > ---------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Hi Dawn. Just wanted to let you know I'm thinking of you and praying you get past this difficult point soon. It must seem with all the bad news and the way you feel that there just isn't a bright side to anything. Hang in there. We are all pulling for you. . -----Original Message-----From: Dawn Sent: Thursday, January 24, 2002 6:29 AMTo: Rpolychondritis Subject: Re: dawn hi everyone I thought after yesterday I should check in. Had a really bad night. did not go to bed till 3 or 4 am. partly because of the bad news i was given yesterday. My brother in law(billy) is not doing so well. And my best friends' husband that already has colon cancer, and just had surgery for that found out that the cancer as spread to his liver. My mom was taken to hosp for test because they think she has pheumonia, so it really has not been a good two or three days. Like i said yesterday just don't feel good and now all of this really has me down and upset. i i do appreciate all of the care and concern it has helped a lot, i am just so tired and down i just don't feel like even moving at this point. don't know how to handle all of the stress right now. always remember everyone that if no one ever tell you they love and care, I am telling you that i will care and love ya all dawn carol applin wrote: Dawn, You hang in there!!!!! I think we all feel likeyou do some time or another...We are all in this together so if you need a shoulderjust email us. We are all here for YOU!!!!!--- Dawn wrote:> > hi guys> > just checking in. Not feeling the best the last few> days, not really flaring, just hurting, like crazy.> > Both ears hurt, and will turn red occasionaly and> just an all over feeling of the blahs, can't sleep,> joints hurt, I don't understand it. I guess it the> winter blah's. Just feel kind of down and under> the weather. Tell me do you guys ever feel like> just giving up. Thats how I feel, just so tired of> the meds, and the side effects and just fighting the> disease, just don't really care anymore.> > dawn> > > > ---------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Dawn, Oh boo hoo! You know I need you and love you too! Don't know what I would do with out all of you guys that is for sure. I see that yahoo was being a butt to you last night in chat. Sorry you couldn't stay there with us. Take care and know I think of you often. Lots of Love Glenda hi glenda wow you sound like i have felt lately, but i sure hope your doing better now. you know you have to take care of your self we need you and love ya bunches. dawn ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Dawn, it will be wonderful for you to have all your grandbabies together. You sound like you have been really busy. Are you feeling okay? I sure hope so. How is your mom doing? I think of you so much and miss our chats. Is your brother in law doing any better? He is still in my thoughts and prayers along with your friends hubby. My feet are doing okay. The dr. won't take the tumors out now because of the pred. The healing process would take too long and I am not a patient person. LOL I bought a really good pair of shoes and have been doing a lot better. Please take care and enjoy those 10 days and have FUN!! hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Dawn So sorry to hear that you are having a flare! Dog gone it anyway. I will keep you in my thoughts and prayers. Take care PLEASE! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 --- Glenda McClennen wrote: > Dawn > So sorry to hear that you are having a flare! Dog > gone it anyway. I will keep you in my thoughts and > prayers. Take care PLEASE! > Lots of love > Glenda > > Add me in here too, Dawn. I have not lost a sibling yet, so I cannot even imagine how hard this must be for your husband and for you. Take care! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 AH, Dawn, that's the pits. You need your sleep so desperately when you are not doing well. Do you have any Ambien, or anything that will help? My grandson who spotted the rainbow is a big fan of camping. He and his dad (our son) go camping, hiking, backpacking every chance that they get. This little boy writes reports in school about the mountains of Oregon, and it blows the teachers away. I love to walk outdoors too, but we keep it simple now. We have a small mountain locally that has nice trails and picnic area's. We try to hike that sometimes. I do enjoy that also. Please take care and hopefully you will be able to sleep tonight. Warm milk? (UGH!) A warm bath with candlelight? A boring book? Oh heck, just go for the sleeping pill! Love, squeek --- Dawn wrote: > > HI > I NOW KNOW WHY I HATE PRED. CAN'T SLEEP, BEEN UP > SINCE YESTERDAY MORNING. > I KNOW WHAT YOUR SAYING ABOUT THE RAINBOWS. THAT > IS WHY I LIKE CAMPING SO MUCH. > I CAN GET BACK TO NATURE AT ITS BEST. WE LIKE TO > WALK IN THE WOODS AND SEE ALL OF THE ANIMIALS, > PLEASE TAKE CARE OF YOURSELF > DAWN > Sharon King wrote: > --- Dawn wrote: > > > > hi to all > > just a quick update. wanted to say thank you for > > all of the support, this is the greatest group of > > people in the world. Yesterday when I was at my > > PCP office he had a resident with him. He > proceeded > > to tell the resident what my disease was, and then > > told me to take time to educate him a bit. So > > believe me I did. I just hope that guy doesn't > > walk out of there and forget everything we told > him. > > My breathing is a bit better today and the > swelling > > in the nose has gone down signfiicantly, The Dr. > > gave me 100 mgs of pred by injection yesterday in > > his office. Then today i started on 60 mgs by > > mouth. I am really down about going on pred > again, > . > > Squeek, I am so sorry you have had such a time > of > > it, I don't post much but, i do read all the > post. > > I am hoping now things have slowed down a bit, > > maybe i can get back to posting again. Thank you > > for caring so much for all of us, you are truly a > > blessing to this group. > > --------------------------------- > Dawn, thank you so much for your kind words! I > appreciate them so much! > > Glad to hear that you are a bit better today. I > know > what you mean about being down about being back on > pred. I haven't been off of it since I started, but > even raising the dosage is enough to get me down. > Just remember, there have to be better days ahead. > > My nine year old grandson and I were sitting in my > recliner last night doing his homework when he > spotted > a beautiful rainbow in the sky. He was so excited > cause it seemed so close and it was so vibrantly > colored. I was able to see it through his eyes, and > reclaim that childhood wonder and awe for just a few > minutes. It was neat. So, remember to look for > those > rainbows, silver linings, or whatever else we can > find > that cheer us and encourage us to keep the faith. > > Love, squeek > > > > > > > ===== > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Dawn, gosh I hope you can get some sleep soon. If not, be sure to check the computer for the " Night Owl Bunch " . Someone is usually here. Boy, it sure was fun in the good ol days when we had a LARGE number of Night Owls. Boy did we ever laugh alot. Thanks group for all the laughs. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Dawn, Heck I am trying to get better and stay better.LOL I sure don't want any of Heidi's pain meds or 's pointy shoes!(I have seen them first hand!LOL) But it sure would be nice if you all three were here I sure would love a hug or two! Thanks for being there always! Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Dawn, What a funny game. I'll definitely be doing this one. My sister may be insulted if we measure heaps, but all's fair in baby showers. Re: CLINIC VISIT & BABY SHOWER IDEAS Congrats on the good visit! How wonderful for her to make it a year with out being in the club. :-) Do you play the guess the mommy's girth game? The guests measure out toilet paper or ribbon to what they think is the mommy's belly girth. After everyone has chosen they measure the mommy and see who was the closest. Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
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