Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Oh gosh I am so very sorry. I'm new to the list and don't know you but your story has touched my heart and I wish you all the best. You seem to be taking this all in stride and I just wanted you to know that I admire you for your courage. Happy thoughts coming your way ... ~Mel Hello everyone... Hello everyone....hope all are staying on target. I am still here and I read the posts every few days. Between work, school, kid's school, and me being ill and keeping going, I haven't had time to post. When I came back from Hawaii I was literally exhausted. I chalked it up to jet lag. Well, after 2 weeks of mere jet lag, it turned out that I have terminal brain cancer. The docs told me that I have 3 to 6 months to go. Well, that was 4 weeks ago. I'm still here and fighting to maintain everything that I do. I didn't choose chemo or radiation, nor operations. I chose to take herbs instead and believe in my God to heal me. My children & I have been staying together close and doing things together. As for Steve, my husband, he is still working in New Zealand. Not the fact, that he doesn't want to be here, but the fact that due to the global terrorism, business is at the lowest in years. He is barely keeping ahead down under. Sounds selfish I know, but I understand. I sure wish he was here tho. I do miss everyone. Once again, I'm sorry for not responding until now. I am alive for now and still battling the weight. I spend every waking hour I'm not working with my kids or resting. I am losing strength. I'm trying to keep the faith. Sometimes, staying positive is the hardest thing to do. Will leave you with this thought .... never go to bed angry with the ones you love ... you may never get a chance to say " I'm sorry " or " I love you " on the morrow. Live life to the fullest ... in the next 10 minutes or even seconds ... YOU could be gone or your loved ones. Blessings everyone. Keep the faith and always tell that loved one ..family or friend... you love em and care for em...... Until next time... aka yahna da bear Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 , I'm so sorry to hear that you are sick, I will pray for you. Thank you for the words of wisdom. They really hit home. Take care Hello everyone... Hello everyone....hope all are staying on target. I am still here and I read the posts every few days. Between work, school, kid's school, and me being ill and keeping going, I haven't had time to post. When I came back from Hawaii I was literally exhausted. I chalked it up to jet lag. Well, after 2 weeks of mere jet lag, it turned out that I have terminal brain cancer. The docs told me that I have 3 to 6 months to go. Well, that was 4 weeks ago. I'm still here and fighting to maintain everything that I do. I didn't choose chemo or radiation, nor operations. I chose to take herbs instead and believe in my God to heal me. My children & I have been staying together close and doing things together. As for Steve, my husband, he is still working in New Zealand. Not the fact, that he doesn't want to be here, but the fact that due to the global terrorism, business is at the lowest in years. He is barely keeping ahead down under. Sounds selfish I know, but I understand. I sure wish he was here tho. I do miss everyone. Once again, I'm sorry for not responding until now. I am alive for now and still battling the weight. I spend every waking hour I'm not working with my kids or resting. I am losing strength. I'm trying to keep the faith. Sometimes, staying positive is the hardest thing to do. Will leave you with this thought .... never go to bed angry with the ones you love ... you may never get a chance to say " I'm sorry " or " I love you " on the morrow. Live life to the fullest ... in the next 10 minutes or even seconds ... YOU could be gone or your loved ones. Blessings everyone. Keep the faith and always tell that loved one ..family or friend... you love em and care for em...... Until next time... aka yahna da bear Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 ... I can barely type this right now. I can't imagine this. I wish Steve were with you. Will he be able to be there anytime soon? How are the children? Do you have someone there to help? ... You know I believe in God... I also believe in what you are doing... Herbs can be miraculous.. I pray they work for you. To say thank you for sharing seems inappropriate. But you do know that we all care, we (I) want to do whatever I can to help you. My love & prayers are with you & your family!!! Hey...... How was Hawaii!?!?!?! (Who is feeling very selfish right now.. worrying about her minor problems... like finishing this stupid paper due tomorrow!) yahnabear wrote: > Hello everyone....hope all are staying on target. I am still here and > I read the posts every few days. Between work, school, kid's school, > and me being ill and keeping going, I haven't had time to post. > > When I came back from Hawaii I was literally exhausted. I chalked it > up to jet lag. Well, after 2 weeks of mere jet lag, it turned out > that I have terminal brain cancer. The docs told me that I have 3 to > 6 months to go. Well, that was 4 weeks ago. I'm still here and > fighting to maintain everything that I do. I didn't choose chemo or > radiation, nor operations. I chose to take herbs instead and believe > in my God to heal me. My children & I have been staying together > close and doing things together. As for Steve, my husband, he is > still working in New Zealand. Not the fact, that he doesn't want to > be here, but the fact that due to the global terrorism, business is > at the lowest in years. He is barely keeping ahead down under. Sounds > selfish I know, but I understand. I sure wish he was here tho. > > I do miss everyone. Once again, I'm sorry for not responding until > now. I am alive for now and still battling the weight. I spend every > waking hour I'm not working with my kids or resting. > > I am losing strength. I'm trying to keep the faith. Sometimes, > staying positive is the hardest thing to do. > > Will leave you with this thought .... never go to bed angry with the > ones you love ... you may never get a chance to say " I'm sorry " or " I > love you " on the morrow. Live life to the fullest ... in the next 10 > minutes or even seconds ... YOU could be gone or your loved ones. > > Blessings everyone. Keep the faith and always tell that loved > one ..family or friend... you love em and care for em...... > > Until next time... > > aka yahna da bear > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 > that I have terminal brain cancer. ((((((((((SUSAN)))))))))) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 > Hello everyone....hope all are staying on target. I am still here and > I read the posts every few days. Between work, school, kid's school, > and me being ill and keeping going, I haven't had time to post. > > aka yahna da bear , I'm so sorry to hear about your illness. I read your posting, again and again, and for once I find myself without words. You're in my thoughts. K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi Josie, Depends on a lot. How long ago did he have the replacement? Was he in rehab or go straight home from hosp.? Is he using that machine (I forgot the name) that bends the leg for him? Is he getting PT yet? If its a newly done surgery, it will feel like dead weight. He MUST do his exercises. Getting back to "his old self" depends on him - everyone is different. I was out of work for 4 months w/mine. Had it Oct. 04 and went back to work Valentine's Day (wow, 1 yr. ago). Keep track on his blood levels when using thinners. The thinners will also give him side effects - there too everyone is different. I was angry, moody and always cold when taking Comoudin. I always tell everyone don't go by me cause my situation was different - I had a tough time. Tell him to work hard and expect it to feel "different" for awhile. It takes a good year to feel yourself but if he does as well as most people it will probably be sooner. I'm here if you need more info. Good luck to him and tell him we're rooting for him. Joy -- Hello Everyone... My husband just had knee replacement and is feeling miserable...Whenwill he start feeling back to his old self again...He cant lift his legup and says it feels like dead weight and cant move it..Can someone tell me alot when will the pain subsided with him..Help...I been nurse with him and I been giving him his blood thiner injectionsas well..Josie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 When will he start feeling back to his old self again... He cant lift his leg up and says it feels like dead weight and cant move it.. >>> I'm a hip patient myself... but I'm a firm believer whether it's knee or hip replacement MOVEMENT is the key to the best possible recovery. If he's not moving because of the pain it will take him twice as long for his body to recover from the trauma and he can loose additional muscle tone in the process of "pampering" the hurt leg only making matters worse if he don't watch. It will feel like dead weight... because that's what it actually is at this point... until he regains his muscle use & movement. PT is painful in the beginning regardless of how you do it but it's a MUST. Tell him to take his meds and get on with it. You can be by his side while he goes though it for encouragement & support... just remember empathy not sympathy. But if he's not willing to help himself then there's not much you can really do to help him recover... that's "his baby" so to speak. PT is one of those "grin & bare it deals"... not much pleasure in the pain during the moment... but the rewards of dedication will pay off in the long run and he'll slowly regain his ablity to move on his own. The longer he puts off doing it or delays because it's "a bad day & hurts"... the longer it will take for him to "get back to normal". Recovery is a slow process for some... and it's a VERY frustrating one at points but one has to remember your body don't go through all that without it "letting you know how it feels". If he stays focused on what he wants instead of what he's currently got... he'll do great. He might want to consider keeping a journal~ least when he gets discouraged about it all... he can look back and recall just how very far he's come to get to where he's at and it adds a lil hope to the issue. There are many knee patients here that have been through the whole process and know first hand what he's experiencing~ sometimes it's best leaning where there is understanding in what your going through, they might even have some nifty tips to help his bounce back. Best of luck~ but tell hubby.... he should get up & come tell us hi too... might help his day! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Welcome Shaun. -L Shaun <twohearts1977@...> wrote: My name is Shaun and I have psoriatic arthritis to name a few of my elments... This is the most painful... I have been put on Humira two shots a month... I also take vicodin at leat three to four times a day, and methorexate... The pain is unbelievable... I joined so I can meet online others like myself, and maybe get some more insite... A place to complain lol... I hope I am Welcome here... Nice to know others are out there and I am not alone... I am Lesbian, partnered for 30ish years now... We live in New Mexico with our three furr kids on half an acre with a double wide trailer... I was disabled in 96 and am home alot so I do enjoy playing on the computer... I also have memory loss so if I repeat myself often please forgive me... Glad to be a part of this group... Shaun and Barb... --------------------------------- Groups are talking. We’re listening. Check out the handy changes to Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Shaun, Welcome to the list. Hope you find some things here to be helpful. Do you find the climate in New Mexico to be good for your PA? Many of us live in climates with much greater humidity and we often find that the humidity makes our PA worse. Kathy F. > > My name is Shaun and I have psoriatic arthritis to name a few of my > elments... This is the most painful... I have been put on Humira two > shots a month... I also take vicodin at leat three to four times a > day, and methorexate... The pain is unbelievable... I joined so I can > meet online others like myself, and maybe get some more insite... A > place to complain lol... I hope I am Welcome here... Nice to know > others are out there and I am not alone... I am Lesbian, partnered for > 30ish years now... We live in New Mexico with our three furr kids on > half an acre with a double wide trailer... I was disabled in 96 and am > home alot so I do enjoy playing on the computer... I also have memory > loss so if I repeat myself often please forgive me... Glad to be a > part of this group... Shaun and Barb... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Welcome Shaun, Don't be embarassed about memory loss, we all deal with that to some degree. Since you live in New Mexico, how does the heat affect you? I notice now that temps are running over 100 degree mark here in No. Calif, that I hurt more and the fatige is worse. On top of that, the air conditioning bothers me. Oh well, you'll see we all complain a little. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Welcome Shaun! I am also on Humira, but I just started taking it every week. The twice a month dosage wasn't putting me quite under control. I pop a pain pill every night to take the edge off the pain so I can sleep. I also have 2 fur-kids whom I love to death! You will get a lot of info from the group. I find it is helpful to hear stories from people who are going through the same things I am. - > > My name is Shaun and I have psoriatic arthritis to name a few of my > elments... This is the most painful... I have been put on Humira two > shots a month... I also take vicodin at leat three to four times a > day, and methorexate... The pain is unbelievable... I joined so I can > meet online others like myself, and maybe get some more insite... A > place to complain lol... I hope I am Welcome here... Nice to know > others are out there and I am not alone... I am Lesbian, partnered for > 30ish years now... We live in New Mexico with our three furr kids on > half an acre with a double wide trailer... I was disabled in 96 and am > home alot so I do enjoy playing on the computer... I also have memory > loss so if I repeat myself often please forgive me... Glad to be a > part of this group... Shaun and Barb... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Well this week its been really humid, but its usually just around this month... Most times I swell anyway... But, I used to live in an area where we had tons of snow and there is NO way I could have lived there... Here even when it does NOT rain much, when it clouds up as today, I swell and hurt a lot... My doctor has me on Humira, Methotrexate, Vicodin, and Sylasyphazien? SP ( Ed.: sulfasalazine...my spelling may be wrong too) Anyway the combination of those have cleared off the scabs and psoriasis on most my body, I still get patches on my elbows, knee's and legs... But NOT like I did... So, mostly I would say yes, it seems much better then snowy area's... I could recommend it here... Just be sure to bring a air conditioner, lol it is very hot even when not humid... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 I am wondering also if I should be put on it once a week... He has me doing twice a month... Sometimes that too does not cut it... I have to take other pills as well... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Thank you... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Yup its more humid then normal so it about knocks me down... My partner just put an air conditioner into the bedroom... I have trouble with heat anyway, and of all the place to finally retire lol... But, I like it better then the snowy Winters where we were, it really got to me... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Welcome to the site, Shaun. I appreciate your candor. I hope you feel as welcome here as I do. ...Brent Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 I am really enjoying the group... I love hearing others with some of the same crap I live with lol... I am very honest, so if I step on toes please tell me... I just like to chat and have fun... But I am serious as all of you with the trouble with go threw... Thanks for Welcoming me here and I do feel at home... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Welcome Shaun!! Glad to have you in the group just sorry you had to join because of PA. I have loads of pain with mine and swelling there are some days that I have to stay in bed because it is too painful to move around. I can't remember if you said you were taking any drug like Enbrel,Humria. Do remember you saying that you take Vicodin for pain daily. I am not on any meds to slow down the process of PA, because my PCP refuses to let me take any of them why because I have had cancer 3 X's and they suppress your immune system, she said my immune system is low enough from chemo and radiation. Which is true, I get sick very easily now. My last chemo tx was in 2000, so my cancer is in remission(thank GOD daily). As you can see I ramble from chemo and PA brain fog and chemo brain. The point I was trying to get to you is you might want to ask your Dr. for Lyrica I take 75mg. in the morning and at night it helps so much with the pain but it also helps with the brain fog too. I chose to live with the brain fog since I will always have it anyway. Also have your thyroid levels checked. For some reason people with PA have problems with thyroid also. (Something my Dr. said) and I had mine taken out in 2000 because they found 4 spots on it cancerous. It is great that you have a partner who is standing beside you through all this. That is a great blessing. Do you have depression also? It comes along with our wonderful PA. it is quite a learning experience having this dreadful disease, but we can make it!! Oh I also meant to tell you that Lyrica is like Celebrex without the side effects, I read on the net somewhere that Lyrica will be taking the place of Celebrex, Neuriton, Vioxx because it has less side effects. I really hope that you can get the pain under control or at least to a point that you can handle it. If you get down just write we will count your blessings together and it will help me also, because I have depression to the extreme of thinking of suicide, but that is as far as it goes is just thoughts, 1 I have a 13 yr old son 2 I believe the scripture that says God will not let Satan put anymore on you than you can handle. God must think I am a really strong person I'm glad he does cuz I don't think so, the pain gets pretty bad at times, that's when I start counting blessings! Now for a little good news I got my back pay on child support for Kasey (13) today, he has never paid a dime and I took it to the attorney generals office and he started paying then we went to court last week about the back pay (with interest) he had 3 choices 1. pay it. 2. go to jail. 3 pay part of it and be put on 10 yrs probation. He made a call to his mother who had given him a blank check she gave him the OK, she thought she was only going to have to pay 1,000 but the back pay was 16,410.50!!! I got it today!! Also I just have to add that " mother " had the nerve to ask me to pay her half of it back, of course at the court house I said yes but when she calls wanting it I am going to tell her that the money is Kasey's and she will be able to get it from her son and we would never see it and why should I have to pay back something that was OWED to me anyway?? Well now that I have written you a book, I will close ,with this note you have found a wonderful group that will always be here for you and I hope your pain reduces so that you can at least handle it, so that you can enjoy life as a PA person and may God bless you with whatever you need. Thanks again for joining. Sharon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Sharon, Answer to a few of your ?'s... I can't remember if you said you were taking any drug like Enbrel, Humira. I take humira two times a month, I give myself a shot and check my blood to make sure it is NOT damaging anything as it does say there are a few it does... I also take Vicodin, Salphsalzine, Methotrexate, Prozac for depression, and a few others... I have had cancer 3 X's and they suppress your immune system, she said my immune system is low enough from chemo and radiation. Which is true, I get sick very easily now. My last chemo tx was in 2000, so my cancer is in remission (thank GOD daily). Great news that you are in remission... That is wonderful... As you can see I ramble from chemo and PA brain fog and chemo brain. I like to do email and groups... So I tend to ramble myself, its okay... The point I was trying to get to you is you might want to ask your Dr. for Lyrica I take 75mg. in the morning and at night it helps so much with the pain but it also helps with the brain fog too. I will ask him about this one... I see him again in two months... Also have your thyroid levels checked. I have no thyroid trouble... He has been checking that... I really hope that you can get the pain under control or at least to a point that you can handle it. Sometimes I have better days, it's the weather lately its got us at 28% humidity today and has been for a few weeks now... Normally we don't have the humidity like many... Just the hot weather so hopefully when that settles and goes back to normal that will help... Now for a little good news I got my back pay on child support for Kasey (13) today. I would NOT give her one damn dime back... He owes it, let him pay her back... That is money owed... It is HIS problem... Love and Peace Always Shaun and Barb [Editor's Note: Shaun, congratulations on the child support. Too many people, often men, make excuses for not paying child support. Children need to be fed, clothed, taken to doctors, given haircuts, etc., whether daddy feels like paying or not. How dare anyone call himself a man or a father if he has failed to pay what he owes to support his own children. You are right - paying back his mother is HIS problem, not yours or Barb's. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 [Editor's Note: Shaun, congratulations on the child support. Too many people, often men, make excuses for not paying child support. Children need to be fed, clothed, taken to doctors, given haircuts, etc., whether daddy feels like paying or not. How dare anyone call himself a man or a father if he has failed to pay what he owes to support his own children. You are right - paying back his mother is HIS problem, not yours or Barb's. Kathy F.] By the way, this was not me... It was the woman that posted and I replied too... Trust me I know... I don't personally have kids I birthed, but my brother is one of those dead beat dads... Always was trouble... But he has two daughters and never supported them at all... They are older now and I don't know what they could do, he <don't blame me> is in prison... He has always been in and out of jail and on SSD cause he too suffers what I do PA... Plus other stuff... I think the one child that he had to share some of the SSD was his legal daughter, he didn't marry the other woman... But since she is of age she no longer gets help that way... I think they owe it they should PAY it... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Sharon, so happy to hear your good news. It was time, huh? sherry z > Now for a > little good news I got my back pay on child support > for Kasey (13) today, he has never paid a dime and I > took it to the attorney generals office and he started > paying then we went to court last week about the back > pay (with interest) he had 3 choices 1. pay it. 2. go > to jail. 3 pay part of it and be put on 10 yrs > probation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Shaun, You are welcome. I'm so sorry about your pain, but I understand I also pop vicoden all too often. Sometimes it's been up to 5 a day. Keep up your faith it will be ok, I promise. Love, Shaun <twohearts1977@...> wrote: My name is Shaun and I have psoriatic arthritis to name a few of my elments... This is the most painful... I have been put on Humira two shots a month... I also take vicodin at leat three to four times a day, and methorexate... The pain is unbelievable... I joined so I can meet online others like myself, and maybe get some more insite... A place to complain lol... I hope I am Welcome here... Nice to know others are out there and I am not alone... I am Lesbian, partnered for 30ish years now... We live in New Mexico with our three furr kids on half an acre with a double wide trailer... I was disabled in 96 and am home alot so I do enjoy playing on the computer... I also have memory loss so if I repeat myself often please forgive me... Glad to be a part of this group... Shaun and Barb... --------------------------------- Groups are talking. We & acute;re listening. Check out the handy changes to Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Thanks , It's a daily struggle for lots of us here I am sure... Shaun, You are welcome. I'm so sorry about your pain, but I understand I also pop vicoden all too often. Sometimes it's been up to 5 a day. Keep up your faith it will be ok, I promise. Love, Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 In a message dated 19/07/2006 00:05:43 GMT Daylight Time, twohearts1977@... writes: My name is Shaun and I have psoriatic arthritis to name a few of my elments... This is the most painful... I have been put on Humira two shots a month.. Hi Shaun, We meet at last! lol Only took me a few weeks to reach your intro mail. I know you will have settled in fine as I have noticed your email address in among my mail, so that is good. You are most certainly welcome here. A lot of us struggle with memory problems at times. Don't know for definite if it is the fatigue through the illness or the drugs combating it but anyway, don't worry about repeating yourself. Don't worry about repeating yourself. Don't worry about.................................ooops! lol Reading on........... Loved the funnies. They will be winging their way to my friends in Ireland and England. lol Oh, just saw the questions. I will answer them later. I hope everything is ok with you Shaun. I just noticed that you have not posted for several days. Hopefully you will have gone on holiday or something and it is not because you are struggling too much. Since you joined you have been great giving people advice and generally being upbeat. Good to have you here. I'll hopefully hear from you later. Tell Barb I said hello. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Don't worry about repeating yourself. Don't worry about.................................ooops! lol HEHEHE Too funny... My family says I do it all the time, but you know, I notice they do too soooo whats their problem lol... Anyway, I really thought I was losing my mind as I could not remember if I had done things at work, home or talked to people, ate lunch ect... But I was told that I have what they call a short term memory loss... I don't really remember a lot of my childhood somewhat certain things, but I guess that is part of it too... Im glad I found this group and that you all are just fine with me lol... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
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