Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hello Kay Please do what ph Wouk (son of Herman) suggests, and Google ldn + RA. I started ldn two weeks ago and slowly but surely I'm feeling better. As this quote from the blurb of his book explains what happens " It [low dose naltrexone] doesn't fight the diseases; the body fights them once the immune system is restored. " " Naltrexone was FDA approved only to treat recovering addicts. The low dose version works its magic by tripling the body's production of endorphins. This restores the immune system to full operation; hence the drug's ability to help so many diseases. It doesn't fight the diseases; the body fights them once the immune system is restored. Because it is now generic, no one will spend the millions required for FDA approval. " A website full of info is: http://ldn.proboards.com/index.cgi Also eliminating dairy food, including cheese, animal fats including eggs, and gluten ishelps reduce pain and inflammation. I'm just eating poultry and fish (apart from the usual other stuff). Fish oil is an anti-inflammatory but it needs antioxidants as well. There's a storm coming and I have to shut down. yours Margaret ________________________________ From: kay.wilde <kay.wilde@...> Sent: Monday, May 11, 2009 7:40:15 PM Subject: [ ] LONG UPDATE Hi Everyone, Haven't posted much since I joined but I have been following all the posts. Thank you for all your helpful information. It has been a belssing. I did have my first visit with my rheumatologist who agreed with my GP's diagnosis of RA based on all the tests taken previously. I like her. She took the time and listened to my work/home situation, my financial/insurance situation, and my concerns about the RA drugs. My life….. past. I'm single, divorced twenty five years ago (once was enough). My children are grown and I've lived alone for twenty five years. As such, I'm extremely independent and hate asking anyone for help. The last thing I, or I suspect any of us, want is to be dependent on our children. I work full time as a secretary/data entry in a real estate office, the biggest and busiest in the county. Though with the real estate crash, all the staff have been cut down to four days a week, which has put a real strain on finances. Barely making it from pay check to pay check. Though that seems to be the norm for most people these days. At least I have insurance, such as it is. It pays the minimum with a $2,000 deductible, which I've more than met, struggling to get those paid off. So, the more expensive meds with high co-pays are out of the question for now. I'm also a published author – writing the love of my life, next to my children. It's the one thing in my life that excites me, excited to see what will happen next on the book I'm working on. It makes me feel good about myself. Currently working on a new novel that I believe can be the best, most successful thing I've written to date…… My life … As it has become with RA….Hands, wrists, and fingers affected so far. I started the year taking only Simvastatin for cholesterol, Levothyroxin for thyroid. After my last big RA flare, Atenolol for high blood pressure was added (my blood pressure had always been on the low side. I hate being forced to take any drugs but had resigned myself to taking those three for the rest of my life. I suspect you all know what happened next. Meloxicam for pain, Omeprozole for an ulcer to counteract the effects of the anti-inflamitory medications and now Plaqinil for the RA for two weeks so far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are in generic form, with minimum co-pay, a few I can even get a three month supply for one co-pay. And I have a prescription for something to help me sleep which I only take if I've had several sleepless nights in a row and am exhausted and barely able to function. I don't want to become dependent on them. I'm just a few years from being able to retire with full benefits and medicare. Retiring early is not an option financially and still being able to make my bills, and afford to eat. My work week starts out waking up an hour earlier than I used to. Depending on how stiff and painful my hands and fingers are. I may hold my hands under hot running water to get them moving, knowing my day is going to be spent at a computer. Some days are better than others, as we all know. Some mornings I would give anything to be able to just stay home and stay in bed until the pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at work. Business is picking up and I have to be there. I simply tell myself that I'm lucky to still have my job and insurance, and, I know that as the day wares on I will feel better. If I stay home I'll accomplish nothing and be depressed, stressed about money. Stress is one of my main triggers. So I get up and go, and push myself to get through the day at the office. Of course I have to eat something to take the drugs. Then deal with the nausea for an hour or so. Attempting to be up-beat and friendly, not at all like the bitch I often feel I am becoming, instead of the positive, nice person I've always believed myself to be. So far, only my office manager knows how bad my RA has really become. Her mother has RA so she is very supportive and understanding. Of course it's only a matter of time until we'll be forced to sit down with my two bosses/owners and discuss options, such as allowing me to come in late on bad mornings and working later on those days. My bosses are great so I'm praying they will work with me. As long as my fingers move, I can do my job. And of course, maybe the Plaquinil will kick in and it won't come to that. I would say keeping my fingers crossed but that HURTS. I have to hold onto my paid sick days because if I have a bad flare my hands are totally useless. I can barely hold a spoon to feed myself. Those are the days that I have to see the doctor for a shot of Cortizone and a round of Prednizone. So I only miss maybe one day of work. I was one of those people who read or listened to all the side effect warnings on medications a swore that I'd never take any of them. That the drugs cause worse problems than the diseases they were supposed to treat. That the benefits weren't worth the risks. Yeah right! Easy enough to say until you are forced to make that choice. I've started rating my days by the pain chart the doctor uses. Number 2-4 pain days have become the norm. I consider them good days. 5-8 days are rough but I can push through them, maybe cheat and take a couple of OTC Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I say more? By the time I get home, the fatigue has kicked in, wrists and my fingers hurt, and I'm wiped-out. However, I need to fix something to eat. Have to eat to keep going but my appetite is non-existent. And of course have to eat to take more meds or the nausea will be worse. My weight loss has been dramatic. The only good thing about that is that I can now wear clothes I haven't worn in years, so I feel like I have a new wardrobe. Also good because I can't afford to by new clothes with all the medical bills. And of course my new book is on the computer waiting for me. I've barely written a chapter since the first of the year. By the time I get home from work I have little to nothing left each day. I can't focus or concentrate. The words that used to come so easily is often a depressing exercise in futility. Especially since I believe with everything in me that if this book does what I believe it can do, it would be my solution to early retirement. I get so frustrated and angry with myself because writing is such a huge part of who I am and what is important in my life. What used to give me so much pleasure has now become a painful struggle. Like everyone else. I want my life back!!!!! My home was always spotless. Now I can barely manage the basics. If a room needed painted. I did it myself, moving furniture, etc. Not any longer. Now when the yard needs mowed or weeds need pulled, I have to wait until my son can do it for me, or have to pay someone to do it. I HATE IT! You know, I honestly think I could learn to live with and manage the pain, but, the fatigue and loss of independence and having to rely on others for the things I was always able to do for myself is the hardest to handle for me. There you have it. My update. I keep telling myself that it's still early on for me, that maybe the lesser RA meds with fewer side effects will work and things will get better, that my life will return to something resembling the normal I used to know. Wishing everyone more normal, pain free days ahead. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi Kay God Bless ya girl. You sound like you are put through a ringer on a daily basis. You have a really good attitude about what it going on with you. I will pray that your meds kick in soon and you can get that pain down to 3-4 a day. That seems to be the average for good days it seems. Heidibug On Mon, May 11, 2009 at 1:40 PM, kay.wilde <kay.wilde@...> wrote: > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Thanks Heidi,  My days are no worse than what many on this list go through. It's just so new to me. I'm trying to adapt and adjust, just like everyone else, learning what I can or can not do, and when. And trying to find ways to simplify many of the things that used to be so simple I didn't give them a second thought. Most of my days are 3-4 days which is better than a lot of people here go through, Which is why the input and support on this group means so much. Unless you have experienced it yourself, you don't have a clue what we go through each day. I know I didn't.  As I said before, it isn't just the pain, or even the fatigue, it's the simple things that I took for granted that frustrate me the most. Even on a good day with little pain, I have no strength in my hands. Something as simple as tearing open a pack of doggie treats is impossible. Thanks God I can still use sissors (most of the time). My other love, reading, has suffered as well. Where before I could get so lost in a book that I could read all day and most of the night without being able to put it down.. Now holding a book for long periods of time makes my hand hurt.  On bad days I've been forced to use both hands just to turn the key in the ignition of my car, or to open the car door. And, getting ready for work on bad days is a joke. Just holding a toothbrush hurts, heck, even squeezing toothpaste from the tube is an effort. You don't want to know the number of four letter words I've used while trying to use the hair dryer or curling iron.  As you've probably guessed, considering the lengh of my posts, today is my day off and a good day, beyond a little achy, it's been relitively pain free, maybe a 1-2 day. Unfortuately tomorrow is the one day a month at work that I dread. I take the minutes of our monthly sales meeting that normally lasts two hours or so. Typing on a computer is one thing, holding a pen and writing non-stop, trying to keep up with what everyone is saying is another. Hurts like hell. I can't afford to make anyone think I can't do my job, so I just tough it out.  Who ever said that the simple things in life are the most important must have had arthritis.  Kay > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi there Kay: I can so relate to alot of what you wrote. I am hoping for better days for you. Have you thought about dictating part of the book you are writing? I know that is not the same as seeing it in type while you are typing it but maybe you can get your thoughts down that way and work on it. I used to type so much for my job that my hands were really bad...............well the Lord intervened and made me change careers. I used to be a legal assistant making ok money and health insurance benefits and so much stress. Well now I work at a job which I love..............it is only part time and I make half of what I used to with no health insurance benefits.................but my hands are better from not typing so much.......................hey you could always send me your tapes and I could transcribe them for you..................oh well it was just a thought.......,LOL Hoping you are feeling better.... Gentle Hugs Pat in Southern oregon Bureau Alvarez Re: [ ] LONG UPDATE Hi Kay God Bless ya girl. You sound like you are put through a ringer on a daily basis. You have a really good attitude about what it going on with you. I will pray that your meds kick in soon and you can get that pain down to 3-4 a day. That seems to be the average for good days it seems. Heidibug On Mon, May 11, 2009 at 1:40 PM, kay.wilde <kay.wilde@...> wrote: > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi Pat,  Thanks for the offer. Who knows, at some point in the future, dictating my story might become a necessity. I hope not though. My fingers and brain seem to have a wierd connection. My fingers seem to have the ability to type what is in my head without me even being conscious of doing so. Does that make sense? Anyway, for now at least, once the morning pain and stiffness eases up, I can type. My main issue with writing at the moment seems to be the fatigue after working eight hours, and my inability to focus and concentrate.  Being forced to seriously deal with arthritis has only gone on since the first of the year. So much to deal with and learn that it seems to have taken over everything. I'm hoping once things level off, I'll be able to set up a doable writing schedule on my days off, taking necessary breaks to rest, that will work for me. It might take me longer than I hoped, but I WILL GET IT WRITTEN.  I can relate to your job change on several levels. My daughter was a corporate paralegal for eighteen years. The last eight as assistant to the chief legal councel of a major corporation. She had uncontrollable high blood pressure. After a mild stroke at 35, her doctor told her if she hoped to see 50, she needed a drastic lifestyle and career change. That's exactly what she did. Are you ready for this? My five foot seven, one hundred--thirty pound daughter is now doing what Forbes magazine lists as one of the most dangerous jobs in the country. She got her CDL license and is driving a big rig truck, long haul, across the country. And, she's never been happier. She loves it. Just the thought of going back into a high stress office is enough to cause her blood pressure to go up. And, after nearly twenty years of trying to get her blood pressure under control, she finally did it, by changing careers.  I know the story is somewhat off topic but it is the perfect example of the different ways stress can affect our health.  Kay from Indiana  > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Kay, Glad you are having a good day. We all learn to appreciate them when they do happen. We also understand thaat it's the little things that are so frustating. I have always been very independant and it bugs me to have to ask for help all the time-esp. with the little things like opening a drink or carrying the clothes basket from one room to another. I have a very supportive and helpful family but I don't think they really understand. I have always been creative at adaptive ideas and ways of doing things (I worked as a nurse for many years and was great at coming up with ways for people to overcome challenges) never dreaming that I would have to be doing the creative thinking for ways to function myself. I try to make a game of it but it's still frustating. Suggestion-why don't you explain to your boss that your hands hurt when having to take the minutes and ask him if it is ok to tape them and type them up later.  Hope you can get some relief. > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Thanks , Yeah, we have to be creative. I've found several uses for a butter knife, the main one, opening tab type cans. I saw a gadget on Home Shopping Channel that eaiisly opens all kinds of cans. Might look into that one. Your suggestion of recording the meeting would be ideal, unfortunately our meetings are held in a large room on the lower level, with up to thirty people present and contributing. Where I might be able to record the boss, there is no way to get all I'd need. And, I really don't want to make my bosses think I can't do my job. I just have to tough it out a bit longer and hope the RA meds will do the what they're supposed to do. I've only been on them a couple of weeks and my Rheumy told me it could take several months to know if they would work. Thanks for taking the time to respond. Kay > > > From: Kay Wilde <kay.wilde@...> > Subject: Re: [ ] LONG UPDATE > > Date: Monday, May 11, 2009, 5:40 PM > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Kay: thanks for the story about your daughter. It just reaffirms that what I did was right. I worked in the legal field 30 years and worked for one attorney for 10 years. I ran his personal injury practice. He had it so good he could take off to Hawaii for 2 weeks at a time with worrying about me handling it. I worked my butt off for him and he never did understand my disabilities. He did give me a bonus one year of two airline tickets to Maui and a week at his condo,,,but that was only once. When he decided to run for Judge, I jumped in an handled alot of the campaign. Two months before the final election, I found out I had a tumor on one kidney and had to have one kidney removed. It turned out to be cancer. I only spent two days in the hospital and returned to the office in half the time the doctor said because I did not want to let him down...........I helped him get elected Judge without thinking of my own health and now he does not even speak to me......go figure that! When my health got worse and I had to have a total knee replacement, I decided it was enough of the legal world. I am so lucky now to work for a Center for Independent Living. We work with seniors and people with disabilities. I am an employment specialist but do much more, like writing grants and marketing our non profit.....I LOVE MY JOB!!!! I only work 20-25 hours per week with no health benefits.........I get by somehow and it helps knowing I help make a difference in people's lives.... We just take our jobs a day at a time and do the best we can............ Thanks for sharing. Gentle Hugs Pat in Southern Ore. Bureau Alvarez ________________________________ From: Kay Wilde <kay.wilde@...> Sent: Monday, May 11, 2009 5:47:17 PM Subject: Re: [ ] LONG UPDATE Hi Pat, Thanks for the offer. Who knows, at some point in the future, dictating my story might become a necessity. I hope not though. My fingers and brain seem to have a wierd connection. My fingers seem to have the ability to type what is in my head without me even being conscious of doing so. Does that make sense? Anyway, for now at least, once the morning pain and stiffness eases up, I can type. My main issue with writing at the moment seems to be the fatigue after working eight hours, and my inability to focus and concentrate. Being forced to seriously deal with arthritis has only gone on since the first of the year. So much to deal with and learn that it seems to have taken over everything. I'm hoping once things level off, I'll be able to set up a doable writing schedule on my days off, taking necessary breaks to rest, that will work for me. It might take me longer than I hoped, but I WILL GET IT WRITTEN. I can relate to your job change on several levels. My daughter was a corporate paralegal for eighteen years. The last eight as assistant to the chief legal councel of a major corporation. She had uncontrollable high blood pressure. After a mild stroke at 35, her doctor told her if she hoped to see 50, she needed a drastic lifestyle and career change. That's exactly what she did. Are you ready for this? My five foot seven, one hundred--thirty pound daughter is now doing what Forbes magazine lists as one of the most dangerous jobs in the country. She got her CDL license and is driving a big rig truck, long haul, across the country. And, she's never been happier. She loves it. Just the thought of going back into a high stress office is enough to cause her blood pressure to go up. And, after nearly twenty years of trying to get her blood pressure under control, she finally did it, by changing careers. I know the story is somewhat off topic but it is the perfect example of the different ways stress can affect our health. Kay from Indiana > > > Hi Everyone, > > Haven't posted much since I joined but I have been following all the posts. > Thank you for all your helpful information. It has been a belssing. > > I did have my first visit with my rheumatologist who agreed with my GP's > diagnosis of RA based on all the tests taken previously. I like her. She > took the time and listened to my work/home situation, my financial/insurance > situation, and my concerns about the RA drugs. > > My life….. past. > > I'm single, divorced twenty five years ago (once was enough). My children > are grown and I've lived alone for twenty five years. As such, I'm extremely > independent and hate asking anyone for help. The last thing I, or I suspect > any of us, want is to be dependent on our children. I work full time as a > secretary/data entry in a real estate office, the biggest and busiest in the > county. Though with the real estate crash, all the staff have been cut down > to four days a week, which has put a real strain on finances. Barely making > it from pay check to pay check. Though that seems to be the norm for most > people these days. > > At least I have insurance, such as it is. It pays the minimum with a $2,000 > deductible, which I've more than met, struggling to get those paid off. So, > the more expensive meds with high co-pays are out of the question for now. > > I'm also a published author – writing the love of my life, next to my > children. It's the one thing in my life that excites me, excited to see what > will happen next on the book I'm working on. It makes me feel good about > myself. Currently working on a new novel that I believe can be the best, > most successful thing I've written to date…… > > My life … As it has become with RA….Hands, wrists, and fingers affected so > far. > > I started the year taking only Simvastatin for cholesterol, Levothyroxin > for thyroid. After my last big RA flare, Atenolol for high blood pressure > was added (my blood pressure had always been on the low side. I hate being > forced to take any drugs but had resigned myself to taking those three for > the rest of my life. I suspect you all know what happened next. Meloxicam > for pain, Omeprozole for an ulcer to counteract the effects of the > anti-inflamitory medications and now Plaqinil for the RA for two weeks so > far. If that doesn't work, my rheumy will add Sulfasalazine. So far all are > in generic form, with minimum co-pay, a few I can even get a three month > supply for one co-pay. And I have a prescription for something to help me > sleep which I only take if I've had several sleepless nights in a row and am > exhausted and barely able to function. I don't want to become dependent on > them. > > I'm just a few years from being able to retire with full benefits and > medicare. Retiring early is not an option financially and still being able > to make my bills, and afford to eat. > > My work week starts out waking up an hour earlier than I used to. Depending > on how stiff and painful my hands and fingers are. I may hold my hands under > hot running water to get them moving, knowing my day is going to be spent at > a computer. Some days are better than others, as we all know. Some mornings > I would give anything to be able to just stay home and stay in bed until the > pain and stiffness eases. NOT AN OPTION. We're short staffed as it is at > work. Business is picking up and I have to be there. I simply tell myself > that I'm lucky to still have my job and insurance, and, I know that as the > day wares on I will feel better. If I stay home I'll accomplish nothing and > be depressed, stressed about money. Stress is one of my main triggers. > > So I get up and go, and push myself to get through the day at the office. > Of course I have to eat something to take the drugs. Then deal with the > nausea for an hour or so. Attempting to be up-beat and friendly, not at all > like the bitch I often feel I am becoming, instead of the positive, nice > person I've always believed myself to be. So far, only my office manager > knows how bad my RA has really become. Her mother has RA so she is very > supportive and understanding. Of course it's only a matter of time until > we'll be forced to sit down with my two bosses/owners and discuss options, > such as allowing me to come in late on bad mornings and working later on > those days. My bosses are great so I'm praying they will work with me. As > long as my fingers move, I can do my job. And of course, maybe the Plaquinil > will kick in and it won't come to that. I would say keeping my fingers > crossed but that HURTS. I have to hold onto my paid sick days because if I > have a bad flare my hands are totally useless. I can barely hold a spoon to > feed myself. Those are the days that I have to see the doctor for a shot of > Cortizone and a round of Prednizone. So I only miss maybe one day of work. > > I was one of those people who read or listened to all the side effect > warnings on medications a swore that I'd never take any of them. That the > drugs cause worse problems than the diseases they were supposed to treat. > That the benefits weren't worth the risks. Yeah right! Easy enough to say > until you are forced to make that choice. > > I've started rating my days by the pain chart the doctor uses. Number 2-4 > pain days have become the norm. I consider them good days. 5-8 days are > rough but I can push through them, maybe cheat and take a couple of OTC > Motirn along with the Meloxicam to help me with the pain. 9-10 days… need I > say more? > > By the time I get home, the fatigue has kicked in, wrists and my fingers > hurt, and I'm wiped-out. However, I need to fix something to eat. Have to > eat to keep going but my appetite is non-existent. And of course have to eat > to take more meds or the nausea will be worse. > My weight loss has been dramatic. The only good thing about that is that I > can now wear clothes I haven't worn in years, so I feel like I have a new > wardrobe. Also good because I can't afford to by new clothes with all the > medical bills. > > And of course my new book is on the computer waiting for me. I've barely > written a chapter since the first of the year. By the time I get home from > work I have little to nothing left each day. I can't focus or concentrate. > The words that used to come so easily is often a depressing exercise in > futility. Especially since I believe with everything in me that if this book > does what I believe it can do, it would be my solution to early retirement. > > I get so frustrated and angry with myself because writing is such a huge > part of who I am and what is important in my life. What used to give me so > much pleasure has now become a painful struggle. > > Like everyone else. I want my life back!!!!! My home was always spotless. > Now I can barely manage the basics. If a room needed painted. I did it > myself, moving furniture, etc. Not any longer. Now when the yard needs mowed > or weeds need pulled, I have to wait until my son can do it for me, or have > to pay someone to do it. I HATE IT! You know, I honestly think I could learn > to live with and manage the pain, but, the fatigue and loss of independence > and having to rely on others for the things I was always able to do for > myself is the hardest to handle for me. > > There you have it. My update. I keep telling myself that it's still early > on for me, that maybe the lesser RA meds with fewer side effects will work > and things will get better, that my life will return to something resembling > the normal I used to know. > > Wishing everyone more normal, pain free days ahead. > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Thanks Margaret! I've flagged this one and will look into it further as a possible option if my current treatment doesn't work. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Hi Kay - I hear your frustration. I feel your pain. I know what you are going through. Don't let this RA get you down! Take a tape recorder to the meetings - I can't hang onto a pen for long either - or get one of those fat barreled pens. Check out http://www.arthritissupplies.com/ or a similar site for aids to help with daily living. Check out http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf to learn how to pace yourself. I take showers at night because I know it uses too many spoons in the morning when I need the most energy and because I know I will be going to bed shortly after so I can rest. It sounds like your Rheumy is taking a normal approach to treating your RA. They usually do start out slowly and gradually get more aggressive with treatment. Don't freak out about not being able to afford the more expensive treatments. If and when the time comes, there are plenty of patient assistance programs out there to help you. I don't have any insurance and thought things were hopeless, until someone here on the list told me about a patient assistance program. Now I will be getting my medication for FREE. Nothing is hopeless with RA. We have to find a new " normal " and that can change from day to day. We have to make adjustments to the way we do things and accept the things we just can't do anymore. The Serenity Prayer has always been a lifeline for me. God has granted me the serenity to accept the things I can't change, the courage to change the things I can and the wisdom to know the difference. Hang in there. Keep us posted. We're all in the same boat here.....Doreen Thanks Heidi, My days are no worse than what many on this list go through. It's just so new to me. I'm trying to adapt and adjust, just like everyone else, learning what I can or can not do, and when. And trying to find ways to simplify many of the things that used to be so simple I didn't give them a second thought. Most of my days are 3-4 days which is better than a lot of people here go through, Which is why the input and support on this group means so much. Unless you have experienced it yourself, you don't have a clue what we go through each day. I know I didn't. As I said before, it isn't just the pain, or even the fatigue, it's the simple things that I took for granted that frustrate me the most. Even on a good day with little pain, I have no strength in my hands. Something as simple as tearing open a pack of doggie treats is impossible. Thanks God I can still use sissors (most of the time). My other love, reading, has suffered as well. Where before I could get so lost in a book that I could read all day and most of the night without being able to put it down.. Now holding a book for long periods of time makes my hand hurt. On bad days I've been forced to use both hands just to turn the key in the ignition of my car, or to open the car door. And, getting ready for work on bad days is a joke. Just holding a toothbrush hurts, heck, even squeezing toothpaste from the tube is an effort. You don't want to know the number of four letter words I've used while trying to use the hair dryer or curling iron. As you've probably guessed, considering the lengh of my posts, today is my day off and a good day, beyond a little achy, it's been relitively pain free, maybe a 1-2 day. Unfortuately tomorrow is the one day a month at work that I dread. I take the minutes of our monthly sales meeting that normally lasts two hours or so. Typing on a computer is one thing, holding a pen and writing non-stop, trying to keep up with what everyone is saying is another. Hurts like hell. I can't afford to make anyone think I can't do my job, so I just tough it out. Who ever said that the simple things in life are the most important must have had arthritis. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Kay, there is no published evidence which demonstrates that low-dose naltrexone is effective in the treatment of rheumatoid arthritis. Not an MD On Tue, May 12, 2009 at 7:45 PM, Kay Wilde <kay.wilde@...> wrote: > > > Thanks Margaret! > > I've flagged this one and will look into it further as a possible option if > my current treatment doesn't work. > > Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 Oh, wow!! Thanks for the clarification, . Things certainly are changing fast in the treatment plans of RA. I have to admit that MTX has given me the most control so far - although not nearly enough. At the time I was diagnosed, it was not the first plan of action, so effective treatment was delayed. I'm glad to see they have " rethunk " this theory.....Doreen > > Just to clarify, Doreen: The standard approach now in the treatment > of rheumatoid arthritis is to start one or more DMARDs immediately. > Today, methotrexate is usually the first choice. > > http://www.ncbi.nlm.nih.gov/pubmed/19373092 > > http://www.ncbi.nlm.nih.gov/pubmed/19247592 > > > Not an MD Quote Link to comment Share on other sites More sharing options...
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