Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hi... My name is Robin. I'm new to the group. My sister is a member and suggested I stop by. I have RA while she has PA. She mentioned you all discuss a lot of the treatments and both PA and RA are treated the same. I just read the message where the person responding stated they had not heard of any one else with P in their ears. I have a tendency towards P during weather changes and when I get it, I get it on my scalp and in my ears. It is its worst in the ears...for me at least. At my sisters recommendation, I asked my Rheumy about the possibility of having PA. He doesn't feel I do especially with my Rheumatoid Factor being higher than he'd ever seen before. He said he could do the test for it but it is not a true diagnostic. As well, they are treated identically, so my treatment would not change (I'm on Humira). It isn't worth the expense. I hope everyone is doing well! " robinmk02 " <robinmk02@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 I'm a lurker but I had to speak up on this one. I also have psoriasis in my ears! I thought I was the only one. Penny ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Be yourself; everyone else is already taken. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Until I mentioned it, I thought I was the only one of a minority!!!! I get the P deep into my ears unless I use Olux foam immediately when it starts. Before my doc discovered Olux foam it drove me MUCH nuttier!! I also have been told that I have PA in my ear joints, definitely on the right side, prob both. Cheryl M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 am wondering how many ppl associate the start of the RA with long term severe stress in their lives? i had major stress for a few y before getting sick. monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi , I also had severe stress about 3 years before. I've always felt that I was born with it, and it lay dormant until something kicks starts it. When I was about 4 or 5, I remember crying with pains in my ankles, and being taken to the doctor, to be told it was growing pains!! I wasn't diagnosed til I was 42, but throughout my life, if I had a virus it always resulted in painful joints. It was the menopause that really brought it out in me. x ________________________________ From: Sauve <moniquesauve@...> Sent: Monday, 30 March, 2009 21:30:42 Subject: [ ] stress am wondering how many ppl associate the start of the RA with long term severe stress in their lives? i had major stress for a few y before getting sick. monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 i've read lots of illnesses and diseases are the result of major stressors even from our early childhood.major stress changes the way our immune sytstems work...causing dysfunction. take care, marg > > am wondering how many ppl associate the start of the RA with long term > severe stress in their lives? i had major stress for a few y before > getting sick. > > monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 I believe that stress can exacerbate any kind of disease and certainly could be the precipitating event that activates an underlying illness. However I don't believe that RA is caused solely by stress. Rather I think the cause is likely a complex interaction between having a combination of genes and how they interact with the environment eg virus, vaccine, contaminant etc. has a lot of interesting articles about the possible role of viruses like EBV. I actually react strongly to the stress idea b/c it's important to me that RA patients not be blamed for somehow bringing their illness upon themselves. This isn't what you're saying of course, I'm just jumping on my soapbox. I think we are just as likely to have experienced stressful life events as any given cancer or diabetes patient, and there isn't anything specific about RA that is linked to emotional stress per se. Not too long ago (~1970s), MDs talked about the " rheumatoid personality " and what Debbie Downers these whiny RA patients could be. I want to be very careful in always avoiding the idea that we somehow reacted to a personal stressor or loss by getting sick. Kate F ________________________________ From: Sauve <moniquesauve@...> Sent: Monday, March 30, 2009 3:30:42 PM Subject: [ ] stress am wondering how many ppl associate the start of the RA with long term severe stress in their lives? i had major stress for a few y before getting sick. monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 stress defintely worsens my RA. my mother got very sick last summer and her surgery is what pushed me into this horrible fflare. it's so important to manage stress especially when we are sick - but when one is ill it's even harder to do. catch 22. monique > > Hi guys, > I haven't posted much but have been reading. But I was wondering if > anyone else has had an issue when they are under stress did their RA > get worse. Since going on arva I haven't had much problems with my RA > but then on September 12 I got layed off and haven't found a new job > yet so I am stressing and I have noticed joints hurting that havenet > gave me a problem in months. Just wondering if anyone else has had > this issue and what you did about it. > Thanks > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Ditto.....I had a divorce and ovarian cancer. The stress tested my personal limits. Raniolo From: Sauve <moniquesauve@...> Subject: [ ] stress Date: Monday, March 30, 2009, 4:30 PM am wondering how many ppl associate the start of the RA with long term severe stress in their lives? i had major stress for a few y before getting sick. monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Count me in for the stress. I was an Admin. for a local DV/SA outfit here for five years just prior to my RA. I quit my job as I thought that no amount of money was worth more than my health. I wish I had known this BEFORE I had taken that job! lol!!! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Trudy,I want you to listen to me. And anyone else currently on treatment or facing treatment, listen up. I can tell by your words that what you are dealing with right now is depression. This is a NORMAL part of treatment. Not that it's a good part but it's an expected part. The first thing I want to assure you of is that YOU ARE NOT DYING. I know it feels like you are and it probably looks like you are but you are not. These medications are POISON pure and simple. The way my doctor explained it to me was this.. and these were his exact words, I will never forget them.. " I am going to poison you right up to the brink of death and then I am going to back you down just enough to keep the poison level from killing you. " He told me I was going to feel like I was dying, he also told me there would be times I wished I was. He also said I was going to hate him for what he was going to do to me. YES, there were times I felt like I was dying. Yes, there were times I prayed to die, and then there were the times that I KNEW I would have to feel better just to die. This treatment SUCKS but it works. It also plays hell with your body chemistry which is why for the time you are on treatment everything else is screwed up. Trudy, I really think all of your crazy lab work and side effects are from the treatment and it will all settle back down once your treatment is over. The big trick here is going to be to get you and your doctors to agree to have you finish out the treatment so you are safe and not sorry. The way I see it, if you are thinking about stopping at week 21 and you are only scheduled for 24 weeks... it's only another 3 shots. In the grand scheme of things, it's not that much longer to just finish it out and be thru with it once and for all with no worries. Now, as for that bubbly little Cougar that your husband married... She's still there. She's just sick right now, but she will be back. Once treatment is over, you will S-L-O-W-L-Y start to regain your strength and brain function. I won't lie to you, it doesn't happen overnight. A few weeks after your last shot, you're going to be sitting outside and realize that it was easy to get up that time.. then you'll wonder when that happened exactly. Little things start falling back into place. Your brain will switch ON again. You WILL be able to hold your head up and you WILL be able to eat and drink normally. You will also stop falling and stumbling.. and I'd bet that the stutter you've been dealing with, will go away on that very last shot day.. Only because you will know it is over. All these thoughts of doom and gloom and mortality... I had them too. I will let you in on a little secret. Not too many people know this but now, all of you will. You know how I have insomnia issues? Wanna know why? I know why. When I was on treatment I was so afraid I was afraid to sleep for fear I would not wake up ever again. My body would just stop functioning. Not a rational thought but it was my thought and I went with it. I am still paying the price for that. There are words that have been used to describe my time and my moods and attitude on treatment. . Words my family can use freely... some of them are: delirious, psychotic, total bitch, sick, pitiful, at death's door and my favorite... my son's reaction to everything.. What the F**K? I don't think there was a time that my son and I had an interaction of any kind where that phrase didn't come out of his mouth. I never ceased to amaze him with my mood swings and mind altering behavior. My son came home from work early one day. He normally worked 4 ten hour shifts so he left at 6 in the morning and would be back around 7 at night.. his 10 hour shifts always wound up running into overtime so he had long days. Anyway this one day he had called home to check on me and I didn't answer the phone... that was unusual. He knew I was feeling bad that morning and hadn't slept all night but usually the phone would wake me up if I managed to snooze for a bit. He didn't work all to far from the house, maybe 20 minutes, and he called his boss and told him he was going to go home and check on me. Ian came home and couldn't find me. I was in the closet. I have no idea why. But there I was sitting on the floor of the closet, with the door mostly closed in the dark with a teddy bear. Just sitting there. I have no idea how he found me but he did and it took him 45 minutes to get me out of there. He got me in bed and called the doctor and his first words to my doc were " What the F**K? " I think they upped my anti-d's at that point. After treatment was over, I eventually got back to quasi normal. I ended treatment in late May or early June. I can't remember which. Anyway, it was warm outside and that was a nice summer. My husband was doing golf demonstrations for Nickent Golf and he would do these on weekends at golf courses and country clubs. He started to take me with him so I would get outside. He started this 3 weeks after my last shot. He will tell you that at first, taking me with was just like throwing another golf bag in the car. But the sun and the outside air and getting out around people helped me SO much. I started to look forward to our weekend outings and where we were going each Saturday. I got better and better. Friends that know me well, the ones that saw me a bunch during treatment were so happy to see me getting back to normal.. or what was my new normal. Many of them told me how afraid they were for me during treatment. Many harbored thoughts that I was going to die. Some of them begged Bruce to have me stop treatment because they were sure it was killing me. Bruce did express these concerns to my doctor who told him to tell them that I was in good hands and I wasn't going to die. There was a time that Bruce and Ian had their doubts on whether or not this treatment would kill me. They were very upset at how sick I was because they were the ones that made the decision for me to undergo this treatment. They decided not me. I didn't have a say in the matter.. I went along for the ride. There is a reason for this long dissertation.. I want you to know that what you are feeling is NORMAL for treatment. You are NOT alone. I'm sure if you ask Gloria and Steve they will also have some stories of craziness and utter doom and gloom from their treatment days. But here is the point, and it's a big one. I am sitting here 5 years later. I am okay. Steve and Gloria and I all got thru this.. Hell, Gloria went thru it twice. We understand how mind bending treatment can be. We also understand that it is part of the process and a side effect from the drugs that are so mean but do such a good job when they work. Now, I want each of you on treatment to take a deep breath, get a glass of water and something little to eat. Eat your snack, drink your water and take a nap please. I think I may have worn you out with this e-mail. But think about what I said. It's really going to be okay. I PROMISE. And we are all here to help you thru this. One day at a time, one hour at a time, one god damn minute at a time if that's what it takes.. okay? I love each and every one of you and I am sending so much positive energy your way it's not even funny. Hugs,Teri On Mon, Jan 3, 2011 at 7:09 AM, trudykinsey@... <trudykinsey@...> wrote: I will get more rest today. Hopefully that will boost my mood & the " fight " in me. Yes, I'm afraid of what the oncologist will say. If so, that will be a bad day . But I am not going to let the What ifs or the Could be's have control of all my days before Dr visit. Just need to rest and then be strong enough to do " battle " . One of my biggest fears is that I beat the dragon, only to find that I am still held down physically. Hubby so believs that a few months after tx & he will have his wife back like before. Hubby is 15 yrs younger. I knew to " date younger " simply cause most men my age couldt keep up . Hubby and I went roller blading the day after we got married. Our honeymoon took us on a charter fishing trip ; later we went to a rodeo.We are pretty much inseperatal (sp). We enjoy the same things, all are outdoors. His co workers tease him about he should know to buy two of everything! He got a new pistol for Christmas. And even Santa knows. I got a really cool XD 40 a day later. But here's what's sad about it. He came to the bedroom and woke me up to show my new pistol. I went out and shot it a coupla times. Then back in bed. I just don't know how many of my issues will still be here or how many will be gone with the HCV. None of us ever do. It feels like all my Drs are deferring to the oncologist. It seems that even the Drs have given up / wrote me off. Even family treats me like I won't be here much longer. Becky says others see a much sicker person than just a coupla months ago.I think Becky even has a bad thought far back in the " closet " of her mind. Only you guys and Hubby are thinking positive thoughts. I know y'alls love and caring will bouy me up through the next 7 days. Anyway, the train of thought at the beginning of this theraputic ramble, was depression-fueled thoughts of how off tx and with NO dragon, I am still a mess. I may be but will gladly welcome any little positive " piece " of me. Many heart- felt thanks to every one of you. And I know many others feel the same. This group has become a true family. Ok , back to bed for a while... http://facebook.com/people/andTrudy-Kinsey/1340460877 " " A well- behaved woman never made history " ...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Good pep talk. I will try to remember that it's the drugs; kinda hard to do when I'm in the midst of the " spiral".I think I confused you..Hdoc wants to stop tx at week 17 which is on appt on Jan 21st. Don't know if it makes any difference.Thank you.http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jan 3, 2011, at 1:08 PM, Theresa Gottlieb <theresagottlieb@...> wrote: Trudy,I want you to listen to me. And anyone else currently on treatment or facing treatment, listen up. I can tell by your words that what you are dealing with right now is depression. This is a NORMAL part of treatment. Not that it's a good part but it's an expected part. The first thing I want to assure you of is that YOU ARE NOT DYING. I know it feels like you are and it probably looks like you are but you are not. These medications are POISON pure and simple. The way my doctor explained it to me was this.. and these were his exact words, I will never forget them.. "I am going to poison you right up to the brink of death and then I am going to back you down just enough to keep the poison level from killing you." He told me I was going to feel like I was dying, he also told me there would be times I wished I was. He also said I was going to hate him for what he was going to do to me. YES, there were times I felt like I was dying. Yes, there were times I prayed to die, and then there were the times that I KNEW I would have to feel better just to die. This treatment SUCKS but it works. It also plays hell with your body chemistry which is why for the time you are on treatment everything else is screwed up. Trudy, I really think all of your crazy lab work and side effects are from the treatment and it will all settle back down once your treatment is over. The big trick here is going to be to get you and your doctors to agree to have you finish out the treatment so you are safe and not sorry. The way I see it, if you are thinking about stopping at week 21 and you are only scheduled for 24 weeks... it's only another 3 shots. In the grand scheme of things, it's not that much longer to just finish it out and be thru with it once and for all with no worries. Now, as for that bubbly little Cougar that your husband married... She's still there. She's just sick right now, but she will be back. Once treatment is over, you will S-L-O-W-L-Y start to regain your strength and brain function. I won't lie to you, it doesn't happen overnight. A few weeks after your last shot, you're going to be sitting outside and realize that it was easy to get up that time.. then you'll wonder when that happened exactly. Little things start falling back into place. Your brain will switch ON again. You WILL be able to hold your head up and you WILL be able to eat and drink normally. You will also stop falling and stumbling.. and I'd bet that the stutter you've been dealing with, will go away on that very last shot day.. Only because you will know it is over. All these thoughts of doom and gloom and mortality... I had them too. I will let you in on a little secret. Not too many people know this but now, all of you will. You know how I have insomnia issues? Wanna know why? I know why. When I was on treatment I was so afraid I was afraid to sleep for fear I would not wake up ever again. My body would just stop functioning. Not a rational thought but it was my thought and I went with it. I am still paying the price for that. There are words that have been used to describe my time and my moods and attitude on treatment. . Words my family can use freely... some of them are: delirious, psychotic, total bitch, sick, pitiful, at death's door and my favorite... my son's reaction to everything.. What the F**K? I don't think there was a time that my son and I had an interaction of any kind where that phrase didn't come out of his mouth. I never ceased to amaze him with my mood swings and mind altering behavior. My son came home from work early one day. He normally worked 4 ten hour shifts so he left at 6 in the morning and would be back around 7 at night.. his 10 hour shifts always wound up running into overtime so he had long days. Anyway this one day he had called home to check on me and I didn't answer the phone... that was unusual. He knew I was feeling bad that morning and hadn't slept all night but usually the phone would wake me up if I managed to snooze for a bit. He didn't work all to far from the house, maybe 20 minutes, and he called his boss and told him he was going to go home and check on me. Ian came home and couldn't find me. I was in the closet. I have no idea why. But there I was sitting on the floor of the closet, with the door mostly closed in the dark with a teddy bear. Just sitting there. I have no idea how he found me but he did and it took him 45 minutes to get me out of there. He got me in bed and called the doctor and his first words to my doc were "What the F**K?" I think they upped my anti-d's at that point. After treatment was over, I eventually got back to quasi normal. I ended treatment in late May or early June. I can't remember which. Anyway, it was warm outside and that was a nice summer. My husband was doing golf demonstrations for Nickent Golf and he would do these on weekends at golf courses and country clubs. He started to take me with him so I would get outside. He started this 3 weeks after my last shot. He will tell you that at first, taking me with was just like throwing another golf bag in the car. But the sun and the outside air and getting out around people helped me SO much. I started to look forward to our weekend outings and where we were going each Saturday. I got better and better. Friends that know me well, the ones that saw me a bunch during treatment were so happy to see me getting back to normal.. or what was my new normal. Many of them told me how afraid they were for me during treatment. Many harbored thoughts that I was going to die. Some of them begged Bruce to have me stop treatment because they were sure it was killing me. Bruce did express these concerns to my doctor who told him to tell them that I was in good hands and I wasn't going to die. There was a time that Bruce and Ian had their doubts on whether or not this treatment would kill me. They were very upset at how sick I was because they were the ones that made the decision for me to undergo this treatment. They decided not me. I didn't have a say in the matter.. I went along for the ride. There is a reason for this long dissertation.. I want you to know that what you are feeling is NORMAL for treatment. You are NOT alone. I'm sure if you ask Gloria and Steve they will also have some stories of craziness and utter doom and gloom from their treatment days. But here is the point, and it's a big one. I am sitting here 5 years later. I am okay. Steve and Gloria and I all got thru this.. Hell, Gloria went thru it twice. We understand how mind bending treatment can be. We also understand that it is part of the process and a side effect from the drugs that are so mean but do such a good job when they work. Now, I want each of you on treatment to take a deep breath, get a glass of water and something little to eat. Eat your snack, drink your water and take a nap please. I think I may have worn you out with this e-mail. But think about what I said. It's really going to be okay. I PROMISE. And we are all here to help you thru this. One day at a time, one hour at a time, one god damn minute at a time if that's what it takes.. okay? I love each and every one of you and I am sending so much positive energy your way it's not even funny. Hugs,Teri On Mon, Jan 3, 2011 at 7:09 AM, trudykinsey@... <trudykinsey@...> wrote: I will get more rest today. Hopefully that will boost my mood & the " fight " in me. Yes, I'm afraid of what the oncologist will say. If so, that will be a bad day . But I am not going to let the What ifs or the Could be's have control of all my days before Dr visit. Just need to rest and then be strong enough to do " battle". One of my biggest fears is that I beat the dragon, only to find that I am still held down physically. Hubby so believs that a few months after tx & he will have his wife back like before. Hubby is 15 yrs younger. I knew to " date younger " simply cause most men my age couldt keep up . Hubby and I went roller blading the day after we got married. Our honeymoon took us on a charter fishing trip ; later we went to a rodeo.We are pretty much inseperatal (sp). We enjoy the same things, all are outdoors. His co workers tease him about he should know to buy two of everything! He got a new pistol for Christmas. And even Santa knows. I got a really cool XD 40 a day later. But here's what's sad about it. He came to the bedroom and woke me up to show my new pistol. I went out and shot it a coupla times. Then back in bed. I just don't know how many of my issues will still be here or how many will be gone with the HCV. None of us ever do. It feels like all my Drs are deferring to the oncologist. It seems that even the Drs have given up / wrote me off. Even family treats me like I won't be here much longer. Becky says others see a much sicker person than just a coupla months ago.I think Becky even has a bad thought far back in the" closet " of her mind. Only you guys and Hubby are thinking positive thoughts. I know y'alls love and caring will bouy me up through the next 7 days. Anyway, the train of thought at the beginning of this theraputic ramble, was depression-fueled thoughts of how off tx and with NO dragon, I am still a mess. I may be but will gladly welcome any little positive " piece " of me. Many heart- felt thanks to every one of you. And I know many others feel the same. This group has become a true family. Ok , back to bed for a while... http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Yep, you confused me and yep it makes a difference. I thought you'd only be missing a couple of 3 shots... not 7 or 8. That's 2 months of treatment time. wow. If you can get him to let you finish and you can hang on and do it, if it were me.. I'd rather be safe than sorry on this one. I'd hate to see that damn virus mutate and rear it's ugly head back at you again. ugh. followed by a big sigh. Hang in there Trudy... you're doing good. You're right up there ready for saint-hood with marie. Now drink some water please and go take that nap.. After your corn dog. Hugs,TeriOn Mon, Jan 3, 2011 at 1:25 PM, trudykinsey@... <trudykinsey@...> wrote: Good pep talk. I will try to remember that it's the drugs; kinda hard to do when I'm in the midst of the " spiral " .I think I confused you..Hdoc wants to stop tx at week 17 which is on appt on Jan 21st. Don't know if it makes any difference. Thank you.http://facebook.com/people/andTrudy-Kinsey/1340460877 " " A well- behaved woman never made history " ...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jan 3, 2011, at 1:08 PM, Theresa Gottlieb <theresagottlieb@...> wrote: Trudy,I want you to listen to me. And anyone else currently on treatment or facing treatment, listen up. I can tell by your words that what you are dealing with right now is depression. This is a NORMAL part of treatment. Not that it's a good part but it's an expected part. The first thing I want to assure you of is that YOU ARE NOT DYING. I know it feels like you are and it probably looks like you are but you are not. These medications are POISON pure and simple. The way my doctor explained it to me was this.. and these were his exact words, I will never forget them.. " I am going to poison you right up to the brink of death and then I am going to back you down just enough to keep the poison level from killing you. " He told me I was going to feel like I was dying, he also told me there would be times I wished I was. He also said I was going to hate him for what he was going to do to me. YES, there were times I felt like I was dying. Yes, there were times I prayed to die, and then there were the times that I KNEW I would have to feel better just to die. This treatment SUCKS but it works. It also plays hell with your body chemistry which is why for the time you are on treatment everything else is screwed up. Trudy, I really think all of your crazy lab work and side effects are from the treatment and it will all settle back down once your treatment is over. The big trick here is going to be to get you and your doctors to agree to have you finish out the treatment so you are safe and not sorry. The way I see it, if you are thinking about stopping at week 21 and you are only scheduled for 24 weeks... it's only another 3 shots. In the grand scheme of things, it's not that much longer to just finish it out and be thru with it once and for all with no worries. Now, as for that bubbly little Cougar that your husband married... She's still there. She's just sick right now, but she will be back. Once treatment is over, you will S-L-O-W-L-Y start to regain your strength and brain function. I won't lie to you, it doesn't happen overnight. A few weeks after your last shot, you're going to be sitting outside and realize that it was easy to get up that time.. then you'll wonder when that happened exactly. Little things start falling back into place. Your brain will switch ON again. You WILL be able to hold your head up and you WILL be able to eat and drink normally. You will also stop falling and stumbling.. and I'd bet that the stutter you've been dealing with, will go away on that very last shot day.. Only because you will know it is over. All these thoughts of doom and gloom and mortality... I had them too. I will let you in on a little secret. Not too many people know this but now, all of you will. You know how I have insomnia issues? Wanna know why? I know why. When I was on treatment I was so afraid I was afraid to sleep for fear I would not wake up ever again. My body would just stop functioning. Not a rational thought but it was my thought and I went with it. I am still paying the price for that. There are words that have been used to describe my time and my moods and attitude on treatment. . Words my family can use freely... some of them are: delirious, psychotic, total bitch, sick, pitiful, at death's door and my favorite... my son's reaction to everything.. What the F**K? I don't think there was a time that my son and I had an interaction of any kind where that phrase didn't come out of his mouth. I never ceased to amaze him with my mood swings and mind altering behavior. My son came home from work early one day. He normally worked 4 ten hour shifts so he left at 6 in the morning and would be back around 7 at night.. his 10 hour shifts always wound up running into overtime so he had long days. Anyway this one day he had called home to check on me and I didn't answer the phone... that was unusual. He knew I was feeling bad that morning and hadn't slept all night but usually the phone would wake me up if I managed to snooze for a bit. He didn't work all to far from the house, maybe 20 minutes, and he called his boss and told him he was going to go home and check on me. Ian came home and couldn't find me. I was in the closet. I have no idea why. But there I was sitting on the floor of the closet, with the door mostly closed in the dark with a teddy bear. Just sitting there. I have no idea how he found me but he did and it took him 45 minutes to get me out of there. He got me in bed and called the doctor and his first words to my doc were " What the F**K? " I think they upped my anti-d's at that point. After treatment was over, I eventually got back to quasi normal. I ended treatment in late May or early June. I can't remember which. Anyway, it was warm outside and that was a nice summer. My husband was doing golf demonstrations for Nickent Golf and he would do these on weekends at golf courses and country clubs. He started to take me with him so I would get outside. He started this 3 weeks after my last shot. He will tell you that at first, taking me with was just like throwing another golf bag in the car. But the sun and the outside air and getting out around people helped me SO much. I started to look forward to our weekend outings and where we were going each Saturday. I got better and better. Friends that know me well, the ones that saw me a bunch during treatment were so happy to see me getting back to normal.. or what was my new normal. Many of them told me how afraid they were for me during treatment. Many harbored thoughts that I was going to die. Some of them begged Bruce to have me stop treatment because they were sure it was killing me. Bruce did express these concerns to my doctor who told him to tell them that I was in good hands and I wasn't going to die. There was a time that Bruce and Ian had their doubts on whether or not this treatment would kill me. They were very upset at how sick I was because they were the ones that made the decision for me to undergo this treatment. They decided not me. I didn't have a say in the matter.. I went along for the ride. There is a reason for this long dissertation.. I want you to know that what you are feeling is NORMAL for treatment. You are NOT alone. I'm sure if you ask Gloria and Steve they will also have some stories of craziness and utter doom and gloom from their treatment days. But here is the point, and it's a big one. I am sitting here 5 years later. I am okay. Steve and Gloria and I all got thru this.. Hell, Gloria went thru it twice. We understand how mind bending treatment can be. We also understand that it is part of the process and a side effect from the drugs that are so mean but do such a good job when they work. Now, I want each of you on treatment to take a deep breath, get a glass of water and something little to eat. Eat your snack, drink your water and take a nap please. I think I may have worn you out with this e-mail. But think about what I said. It's really going to be okay. I PROMISE. And we are all here to help you thru this. One day at a time, one hour at a time, one god damn minute at a time if that's what it takes.. okay? I love each and every one of you and I am sending so much positive energy your way it's not even funny. Hugs,Teri On Mon, Jan 3, 2011 at 7:09 AM, trudykinsey@... <trudykinsey@...> wrote: I will get more rest today. Hopefully that will boost my mood & the " fight " in me. Yes, I'm afraid of what the oncologist will say. If so, that will be a bad day . But I am not going to let the What ifs or the Could be's have control of all my days before Dr visit. Just need to rest and then be strong enough to do " battle " . One of my biggest fears is that I beat the dragon, only to find that I am still held down physically. Hubby so believs that a few months after tx & he will have his wife back like before. Hubby is 15 yrs younger. I knew to " date younger " simply cause most men my age couldt keep up . Hubby and I went roller blading the day after we got married. Our honeymoon took us on a charter fishing trip ; later we went to a rodeo.We are pretty much inseperatal (sp). We enjoy the same things, all are outdoors. His co workers tease him about he should know to buy two of everything! He got a new pistol for Christmas. And even Santa knows. I got a really cool XD 40 a day later. But here's what's sad about it. He came to the bedroom and woke me up to show my new pistol. I went out and shot it a coupla times. Then back in bed. I just don't know how many of my issues will still be here or how many will be gone with the HCV. None of us ever do. It feels like all my Drs are deferring to the oncologist. It seems that even the Drs have given up / wrote me off. Even family treats me like I won't be here much longer. Becky says others see a much sicker person than just a coupla months ago.I think Becky even has a bad thought far back in the " closet " of her mind. Only you guys and Hubby are thinking positive thoughts. I know y'alls love and caring will bouy me up through the next 7 days. Anyway, the train of thought at the beginning of this theraputic ramble, was depression-fueled thoughts of how off tx and with NO dragon, I am still a mess. I may be but will gladly welcome any little positive " piece " of me. Many heart- felt thanks to every one of you. And I know many others feel the same. This group has become a true family. Ok , back to bed for a while... http://facebook.com/people/andTrudy-Kinsey/1340460877 " " A well- behaved woman never made history " ...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Yep, I have corn dog in the oven. My nap routine keeps getting ruined. Hubby on way home from Urgent Care. Home 2 more days. Sinus/ head cold that went to his chest. I'm glad he went, I told him he I couldn't get sick from him. It would be bad. First time in our 11 years he has seen a Dr. Thx to all who made me see that it's just the meds..http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jan 3, 2011, at 1:40 PM, Theresa Gottlieb <theresagottlieb@...> wrote: Yep, you confused me and yep it makes a difference. I thought you'd only be missing a couple of 3 shots... not 7 or 8. That's 2 months of treatment time. wow. If you can get him to let you finish and you can hang on and do it, if it were me.. I'd rather be safe than sorry on this one. I'd hate to see that damn virus mutate and rear it's ugly head back at you again. ugh. followed by a big sigh. Hang in there Trudy... you're doing good. You're right up there ready for saint-hood with marie. Now drink some water please and go take that nap.. After your corn dog. Hugs,TeriOn Mon, Jan 3, 2011 at 1:25 PM, trudykinsey@... <trudykinsey@...> wrote: Good pep talk. I will try to remember that it's the drugs; kinda hard to do when I'm in the midst of the " spiral".I think I confused you..Hdoc wants to stop tx at week 17 which is on appt on Jan 21st. Don't know if it makes any difference. Thank you.http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jan 3, 2011, at 1:08 PM, Theresa Gottlieb <theresagottlieb@...> wrote: Trudy,I want you to listen to me. And anyone else currently on treatment or facing treatment, listen up. I can tell by your words that what you are dealing with right now is depression. This is a NORMAL part of treatment. Not that it's a good part but it's an expected part. The first thing I want to assure you of is that YOU ARE NOT DYING. I know it feels like you are and it probably looks like you are but you are not. These medications are POISON pure and simple. The way my doctor explained it to me was this.. and these were his exact words, I will never forget them.. "I am going to poison you right up to the brink of death and then I am going to back you down just enough to keep the poison level from killing you." He told me I was going to feel like I was dying, he also told me there would be times I wished I was. He also said I was going to hate him for what he was going to do to me. YES, there were times I felt like I was dying. Yes, there were times I prayed to die, and then there were the times that I KNEW I would have to feel better just to die. This treatment SUCKS but it works. It also plays hell with your body chemistry which is why for the time you are on treatment everything else is screwed up. Trudy, I really think all of your crazy lab work and side effects are from the treatment and it will all settle back down once your treatment is over. The big trick here is going to be to get you and your doctors to agree to have you finish out the treatment so you are safe and not sorry. The way I see it, if you are thinking about stopping at week 21 and you are only scheduled for 24 weeks... it's only another 3 shots. In the grand scheme of things, it's not that much longer to just finish it out and be thru with it once and for all with no worries. Now, as for that bubbly little Cougar that your husband married... She's still there. She's just sick right now, but she will be back. Once treatment is over, you will S-L-O-W-L-Y start to regain your strength and brain function. I won't lie to you, it doesn't happen overnight. A few weeks after your last shot, you're going to be sitting outside and realize that it was easy to get up that time.. then you'll wonder when that happened exactly. Little things start falling back into place. Your brain will switch ON again. You WILL be able to hold your head up and you WILL be able to eat and drink normally. You will also stop falling and stumbling.. and I'd bet that the stutter you've been dealing with, will go away on that very last shot day.. Only because you will know it is over. All these thoughts of doom and gloom and mortality... I had them too. I will let you in on a little secret. Not too many people know this but now, all of you will. You know how I have insomnia issues? Wanna know why? I know why. When I was on treatment I was so afraid I was afraid to sleep for fear I would not wake up ever again. My body would just stop functioning. Not a rational thought but it was my thought and I went with it. I am still paying the price for that. There are words that have been used to describe my time and my moods and attitude on treatment. . Words my family can use freely... some of them are: delirious, psychotic, total bitch, sick, pitiful, at death's door and my favorite... my son's reaction to everything.. What the F**K? I don't think there was a time that my son and I had an interaction of any kind where that phrase didn't come out of his mouth. I never ceased to amaze him with my mood swings and mind altering behavior. My son came home from work early one day. He normally worked 4 ten hour shifts so he left at 6 in the morning and would be back around 7 at night.. his 10 hour shifts always wound up running into overtime so he had long days. Anyway this one day he had called home to check on me and I didn't answer the phone... that was unusual. He knew I was feeling bad that morning and hadn't slept all night but usually the phone would wake me up if I managed to snooze for a bit. He didn't work all to far from the house, maybe 20 minutes, and he called his boss and told him he was going to go home and check on me. Ian came home and couldn't find me. I was in the closet. I have no idea why. But there I was sitting on the floor of the closet, with the door mostly closed in the dark with a teddy bear. Just sitting there. I have no idea how he found me but he did and it took him 45 minutes to get me out of there. He got me in bed and called the doctor and his first words to my doc were "What the F**K?" I think they upped my anti-d's at that point. After treatment was over, I eventually got back to quasi normal. I ended treatment in late May or early June. I can't remember which. Anyway, it was warm outside and that was a nice summer. My husband was doing golf demonstrations for Nickent Golf and he would do these on weekends at golf courses and country clubs. He started to take me with him so I would get outside. He started this 3 weeks after my last shot. He will tell you that at first, taking me with was just like throwing another golf bag in the car. But the sun and the outside air and getting out around people helped me SO much. I started to look forward to our weekend outings and where we were going each Saturday. I got better and better. Friends that know me well, the ones that saw me a bunch during treatment were so happy to see me getting back to normal.. or what was my new normal. Many of them told me how afraid they were for me during treatment. Many harbored thoughts that I was going to die. Some of them begged Bruce to have me stop treatment because they were sure it was killing me. Bruce did express these concerns to my doctor who told him to tell them that I was in good hands and I wasn't going to die. There was a time that Bruce and Ian had their doubts on whether or not this treatment would kill me. They were very upset at how sick I was because they were the ones that made the decision for me to undergo this treatment. They decided not me. I didn't have a say in the matter.. I went along for the ride. There is a reason for this long dissertation.. I want you to know that what you are feeling is NORMAL for treatment. You are NOT alone. I'm sure if you ask Gloria and Steve they will also have some stories of craziness and utter doom and gloom from their treatment days. But here is the point, and it's a big one. I am sitting here 5 years later. I am okay. Steve and Gloria and I all got thru this.. Hell, Gloria went thru it twice. We understand how mind bending treatment can be. We also understand that it is part of the process and a side effect from the drugs that are so mean but do such a good job when they work. Now, I want each of you on treatment to take a deep breath, get a glass of water and something little to eat. Eat your snack, drink your water and take a nap please. I think I may have worn you out with this e-mail. But think about what I said. It's really going to be okay. I PROMISE. And we are all here to help you thru this. One day at a time, one hour at a time, one god damn minute at a time if that's what it takes.. okay? I love each and every one of you and I am sending so much positive energy your way it's not even funny. Hugs,Teri On Mon, Jan 3, 2011 at 7:09 AM, trudykinsey@... <trudykinsey@...> wrote: I will get more rest today. Hopefully that will boost my mood & the " fight " in me. Yes, I'm afraid of what the oncologist will say. If so, that will be a bad day . But I am not going to let the What ifs or the Could be's have control of all my days before Dr visit. Just need to rest and then be strong enough to do " battle". One of my biggest fears is that I beat the dragon, only to find that I am still held down physically. Hubby so believs that a few months after tx & he will have his wife back like before. Hubby is 15 yrs younger. I knew to " date younger " simply cause most men my age couldt keep up . Hubby and I went roller blading the day after we got married. Our honeymoon took us on a charter fishing trip ; later we went to a rodeo.We are pretty much inseperatal (sp). We enjoy the same things, all are outdoors. His co workers tease him about he should know to buy two of everything! He got a new pistol for Christmas. And even Santa knows. I got a really cool XD 40 a day later. But here's what's sad about it. He came to the bedroom and woke me up to show my new pistol. I went out and shot it a coupla times. Then back in bed. I just don't know how many of my issues will still be here or how many will be gone with the HCV. None of us ever do. It feels like all my Drs are deferring to the oncologist. It seems that even the Drs have given up / wrote me off. Even family treats me like I won't be here much longer. Becky says others see a much sicker person than just a coupla months ago.I think Becky even has a bad thought far back in the" closet " of her mind. Only you guys and Hubby are thinking positive thoughts. I know y'alls love and caring will bouy me up through the next 7 days. Anyway, the train of thought at the beginning of this theraputic ramble, was depression-fueled thoughts of how off tx and with NO dragon, I am still a mess. I may be but will gladly welcome any little positive " piece " of me. Many heart- felt thanks to every one of you. And I know many others feel the same. This group has become a true family. Ok , back to bed for a while... http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx Quote Link to comment Share on other sites More sharing options...
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