Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Dear Pat, I understand how you feel about quitting work. When I finally gave up going in, I was lost for days. The only thing that " helped " me deal with it; I was too sick and in too much pain to care too much. In the last 3.5 years, I haven't officially worked (my husband and I own a insurance company that we ran together for 13 years), I haven't driven, I normally use a wheelchair when I do go out for any period of time, and in the last two years both my girls moved out so I'm dealing with the empty nest syndrome. I never worried about missing them too much, since I knew my husband and I would be really busy working and hopefully taking those vacations we planned together. Life doesn't always work out like we plan as all of us with PA are well aware. I did have a grieving period when I stayed home. For a long time I was depressed and kept trying to figure out how to heal myself, since my doctor's didn't seem to have a clue. All that did was lead to more frustration. It' stood to know everything we can about our disease, but when we try and play doctor to ourselves it only tends to depress you more. Before when I had free time I always worked on stained glass art, but I quickly found that my hands weren't strong enough to cut the glass anymore. Then one day I was playing around on Ebay and came across some mosaic art work and fell in love. I realized I could do this since most of the glass tiles are cut already and at the most you only have to trim them down. So I jumped in with both feet, since my hands are so bad...lol, and didn't look back. I just love it. I now have my own web site and am selling my things on ebay. It's slow, but Ebay is just slow right now. The only thing I really want to do is pay for my supplies right now. I read constantly, and try to watch as little TV as possible. I've found at least with me, the move TV I watch the more depressed I get. I have no idea why, but maybe it's because I'm just stuck in one place. I need to be busy with something as long as the pain isn't too bad. Believe it or not my days go pretty quickly now, and I basically am home alone the whole day. I don't have a lot of close friends since when we moved here, all I had time for was my family and the office. Now both are basically moving on and sometimes I wish I had taken the time to make close friends here. It's not that easy to do when you are limited physically. Luckily, I have two great girls who come home and see me all the time. MY husband is great and very sup portative when he's home, unfortunately he works way too much. I do get lonely from time to time, but the Internet helps. I guess what I'm saying in a round about way, is your do adjust. It's not easy and at times you want to scream, but all in all you can still find happiness just about anywhere if you look hard enough. I hope your transition isn't too rough and you don't miss the kids and your fellow workers too much. You are most likely doing the best ting for yourself and hopefully the rest will give you more energy to face this stupid disease. Take care and write me anytime. I hope things improve for you and you adjust just fine. Keep in touch. Love, Fran [ ] Feeling sad Hi Everyone, After being out of work for the past month, and not getting any better, my husband and I decided we have try for the disability. I have been on medical leave in a job I love. I work as an aide for developmentally disabled children. I have Psoriatic arthrits, fibromyalgia, osteoarthritis in the spine and myrofacial pain syndrome and the starts of COPD. Last month I went to HR and asked if there was any other work in the school district that they could give me. There answer was no according to limitations from Dr. So for the past month I searched my soul to find in my heart whether I could really work. There are two issues the stiffness and pain and reliability. I am not reliable. The pain is so bad some days the thought of just trying to think hurts. If that makes sense. I am only 45. I know in my heart, that if I work I have nothing left in me for my family. I know if I work I am not reliable because some days I am the tin man. Financially we are not in good shape, but are figuring we can just scrape by. It will be very hard. In the meanwhile, I am in my last year of online courses for a college degree, so I am going to finish. Just for myself. I started college in 1986 or so. I hope the process does not drag on for years. I was on disability before for seizures and lost it when I went to work for the school district. See I preferred to work than collect disability but now my body has won, the disease has progressed quickly over the last year. It is sad but a matter of acceptance. Today I have to go say goodbye to the kiddos in my classroom. This will break my heart, but I know they need someone who can be there for them. I work with a wonderful supportive group of people and will miss them. So, today is the first day of the rest of my life. Although different there are still many opportunities for me to explore that I never had time to before with full time work and school and family. Please bear with me the next few weeks if I seem to go through some emotional ups and downs. As for now, I am glad thanksgiving is coming. It will help me to realize that although limited I still have life, family and wonderful friends like all of you. For this I am thankful. I am thankful, I am not dying and hopefully god willing will see my children graduate high school and move on in life. thanks for listening, Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Dear Pat, My heart hurt for you, reading your post. i was in exactly the same place you are mid june, 2003 when i finally had to give in to my body as well... and i have no regrets. (i was a tin man too, though better now, thankfully). one of the hardest things was how it affected me self-esteem. i have always been a 'super-woman' type of individual who could do it all and i was so angry with my body for doing this to me - my mind was so willing but my blasted body had a mind of its own and controlled the situation. i am relatively lucky as i was 50 when this happened, not 45 like you - but i have been suffering with fm since a major car accident when i was 20 so had some ups and downs throughout the years as well.... but .... stopping work was the best things i could do - physically. the lack of stress really helped - getting the extra sleep - being able to just veg for the day if i wanted.... so much less pressure. i hope i will be able to return to work in the near future - during the summer things improved but with vioxx being taken off the market i am struggling again and quite flar-y, so my doc says 'no'. i am a legal secretary and as my fingers and wrists are so badly affected, it's kind of hopeless at the moment. one other thing - and please, i hope i don't sound like i'm preaching - but try to be kind to yourself and don't put the added burden of feeling like a failure or less of a contributing person to society because you need to make this step. by making it you are being kind to you. it might take awhile to realize this but hopefully you will find some peace. lastly, is there anything you have always wanted to do, but could not.... my passion is nature, and flowers and i spent many many hours in my garden enjoying the seasons, going for a small walk (I live in a rural area and with properly fitting shoes my feet are better now) and drinking in all the beauty around me. little simple things but now, because i no longer work i have the time to smell the proverbial bacon. there is joy and beauty to be found in simple things, i find. things we generally miss in the busy lives we lead. good luck pat - with this and your college degree... and try to enjoy your new free time. gentle hugs, karen > > > Hi Everyone, > > After being out of work for the past month, and not getting any > better, my husband and I decided we have try for the disability. I > have been on medical leave in a job I love. I work as an aide for > developmentally disabled children. I have Psoriatic arthrits, > fibromyalgia, osteoarthritis in the spine and myrofacial pain > syndrome and the starts of COPD. > > Last month I went to HR and asked if there was any other work in the > school district that they could give me. There answer was no > according to limitations from Dr. So for the past month I searched my > soul to find in my heart whether I could really work. There are two > issues the stiffness and pain and reliability. I am not reliable. The > pain is so bad some days the thought of just trying to think hurts. > If that makes sense. I am only 45. I know in my heart, that if I work > I have nothing left in me for my family. I know if I work I am not > reliable because some days I am the tin man. > > Financially we are not in good shape, but are figuring we can just > scrape by. It will be very hard. In the meanwhile, I am in my last > year of online courses for a college degree, so I am going to finish. > Just for myself. I started college in 1986 or so. > > I hope the process does not drag on for years. I was on disability > before for seizures and lost it when I went to work for the school > district. See I preferred to work than collect disability but now my > body has won, the disease has progressed quickly over the last year. > > It is sad but a matter of acceptance. Today I have to go say goodbye > to the kiddos in my classroom. This will break my heart, but I know > they need someone who can be there for them. I work with a wonderful > supportive group of people and will miss them. > > So, today is the first day of the rest of my life. Although different > there are still many opportunities for me to explore that I never had > time to before with full time work and school and family. > > Please bear with me the next few weeks if I seem to go through some > emotional ups and downs. As for now, I am glad thanksgiving is > coming. It will help me to realize that although limited I still have > life, family and wonderful friends like all of you. For this I am > thankful. I am thankful, I am not dying and hopefully god willing > will see my children graduate high school and move on in life. > > thanks for listening, > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Bjorn, I am not sure why you think nobody cares about your mom. There have been many encouraging and supportive postings each time you let us know how she is doing. I am sorry you feel she is not cared about anymore...but it is simply untrue. Everyone is hoping and praying for the best for her and your family. I am certain not one person involved has " forgotten " her. Your pain and suffering as a family are also on our minds. I hope you will come back online long enough to read this. I will continue to pray for your Mother and your family. annie and the pugherd SPAM-LOW: Re: [ ] Re: Feeling sad i see this group has forgotten about my mom brenda its okay she is just a burden on thisgroup thanks for giving up i never did, she has now had a stroke and , well im sorry for bothering you all , my mom was dedicated to this group and others, when i tell her no one cares anymore its gonna break her heart im sorry for dumping my moms health on this group i will not post again .. bjorn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Thank you , Your kind words and understanding mean so much. The stress of making the decision to work or not was difficult and I am relieved in some ways that it is over. You are absolutely right, about taking time to appreciate the simple things in life that pass us by when we are so busy. I know I made the right choice, and am grateful that it was a choice I could make. Without the support of my hubby and friends it would have been much more difficult. So this Thanksgiving I am thankful for so much. I am not looking at what I have lost as to try to see all the opportunities I have gained. Thanks Again Pat > > > Dear Pat, > > My heart hurt for you, reading your post. i was in exactly the same > place you are mid june, 2003 when i finally had to give in to my body > as well... and i have no regrets. (i was a tin man too, though > better now, thankfully). one of the hardest things was how it > affected me self-esteem. i have always been a 'super-woman' type of > individual who could do it all and i was so angry with my body for > doing this to me - my mind was so willing but my blasted body had a > mind of its own and controlled the situation. i am relatively lucky > as i was 50 when this happened, not 45 like you - but i have been > suffering with fm since a major car accident when i was 20 so had > some ups and downs throughout the years as well.... but .... > stopping work was the best things i could do - physically. the lack > of stress really helped - getting the extra sleep - being able to > just veg for the day if i wanted.... so much less pressure. i hope i > will be able to return to work in the near future - during the summer > things improved but with vioxx being taken off the market i am > struggling again and quite flar-y, so my doc says 'no'. i am a legal > secretary and as my fingers and wrists are so badly affected, it's > kind of hopeless at the moment. > > one other thing - and please, i hope i don't sound like i'm > preaching - but try to be kind to yourself and don't put the added > burden of feeling like a failure or less of a contributing person to > society because you need to make this step. by making it you are > being kind to you. it might take awhile to realize this but > hopefully you will find some peace. > > lastly, is there anything you have always wanted to do, but could > not.... my passion is nature, and flowers and i spent many many > hours in my garden enjoying the seasons, going for a small walk (I > live in a rural area and with properly fitting shoes my feet are > better now) and drinking in all the beauty around me. little simple > things but now, because i no longer work i have the time to smell the > proverbial bacon. there is joy and beauty to be found in simple > things, i find. things we generally miss in the busy lives we lead. > > good luck pat - with this and your college degree... and try to enjoy > your new free time. > > gentle hugs, > > karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Dear Pat, How long have you been on Enbrel? I know with some it can take awhile to work, but a lot of people see a reduction in their pain. I wouldn't wait until Dec 8th to find out about pain control. Why don't you call your doctor and see if he can call in a pain prescription to get you through to the next appointment? I know a lot of doctors don't like to write pain medications, but I wouldn't make through the days without my pain medication. I used to worry all the time about addiction, but I finally realized that it didn't matter. I simply didn't have a life without the pain control. So if by some miracle all my pain would be gone tomorrow, I might have to face a withdrawal problem from the medication. Personally, compared to the pain, I know I can handle that. As far as Humira goes, a lot of people have positive results with that as well. Unfortunately I was allergic to both drugs and couldn't take either. I think of the two of them, Humira is newer. The only thing I really remember about Humira is the shots really did sting, where the Enbrel injections didn't hurt at all. But if it works, that's a small price to pay for feeling better. You sound like you have a positive attitude on dealing with quitting work. That will make a huge difference and make it so much easier. It's not easier, but like so many have written your life goes on, just in a different way. Keeping active in school will be great. I loved school, and constantly read all the time. My only problem now is holding up a heavy book. I try and wait until everything comes out in paperback, but I hate waiting on the best sellers that long. Maybe I'll look into one of those computer books where you down load the novel to a small hand held computer. That might be my answer. Anyway, I hope you feel better soon and don't suffer until Dec 8th. That's too long to be so miserable. Let me know how you are doing and hang in there. Love, Fran [ ] Re: Feeling sad Hi Fran, As always thank you for your kind supportive words. I think perhaps this was a good time of year to leave since the holidays are busy anyways, even though I am not doing very much for them I am still involved in the planning. My online courses in the Spring will help keep my mind occupied, I love school and learning new things. I know things will eventually work out and I will adjust. The hardest part for me is trying to forget about the disease and not dwell on it. The pain is just so bad in my hands and knees and hips that it doesn't let me forget. I see the Dr again on Dec 8th so I hope perhaps he can help with some of the stiffness and pain. Do any of you know how Humara works on PA? The enbrel doesn't seem to be doing what it should. The Rhuemy said he might switch me to humara and put me back on the MTX. Thanks Again Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Pat, Everyone is different, of course, but I have been on Humira for about 13 months and I am doing better than I have done in years. Humira can't reverse the permanent damage that my joints have suffered thanks to 39 years of PA, but I feel so much less pain and can do so many more things than I could do a year ago. A year ago I couldn't even cut the turkey on my plate on Thanksgiving while this year I'll be helping to cook the feast. The shots sting going in but you only need one every two weeks. I find that letting the meds come to room temperature before I inject as well as freezing the site with a box of frozen peas (frozen corn would work, too, LOL) as well as injecting very slooooowly, all make the shot easier to take AND I have very little itching or site swelling afterwards. I hope it is a magic potion for you, too. Best, Kathy F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Dear Pat, Big (((Hugs))) dear. Wish I could give you some in person. YOu know, my motto in life has always been " for every grey cloud, there is a silver lining " . Keeping that in my mind, always, has helped me get through and overcome those big humps.... and those simple things for me are the silver linings. I hope you find some too.... If you every feel like emailing me off line, please feel free to do so. I would be more than pleased to chat with you. Take care, (((HUGS))) > > Thank you , Your kind words and understanding mean so much. The > stress of making the decision to work or not was difficult and I am > relieved in some ways that it is over. You are absolutely right, > about taking time to appreciate the simple things in life that pass > us by when we are so busy. > > I know I made the right choice, and am grateful that it was a choice > I could make. Without the support of my hubby and friends it would > have been much more difficult. > > So this Thanksgiving I am thankful for so much. I am not looking at > what I have lost as to try to see all the opportunities I have gained. > > Thanks Again > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 --- Hi Bjorn, I think we all sent you thoughts of prayers for your Mother . We haven't heard anything about her and were hoping that you would keep us updated. Yours and Mom's messages are strangely just alike. Thoughts of prayers to you and your Mom, Sue. In , brenda stein <leelioness662002@y...> wrote: > > i see this group has forgotten about my mom brenda its okay she is just a burden on thisgroup thanks for giving up i never did, she has now had a stroke and , well im sorry for bothering you all , my mom was dedicated to this group and others, when i tell her no one cares anymore its gonna break her heart im sorry for dumping my moms health on this group i will not post again .. bjorn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 , Everything I've learned about shooting up, I've learned from here, LOL, however the use of a box of frozen peas as a numbing agent is my brainchild. Perhaps that makes me pea-brained? I usually keep the peas on my injection site (my thighs) for about 15 minutes before injecting. Please let us know if it helps you, too, . Best, Kathy F. In a message dated 11/19/2004 4:23:51 PM Eastern Standard Time, missionblondie@... writes: Kathy, I'm not on Humira but get injected with gold every week and it is very well know for its major sting qualities. I get it in my hip and always have to instruct where to put it in because of nerve endings and the like - and yes, the rule of the day is SLOWLY please. The idea of numbing the site with frozen peas is brilliant - I will have to give that a try. Thanks for the heads up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Kathy, I'm not on Humira but get injected with gold every week and it is very well know for its major sting qualities. I get it in my hip and always have to instruct where to put it in because of nerve endings and the like - and yes, the rule of the day is SLOWLY please. The idea of numbing the site with frozen peas is brilliant - I will have to give that a try. Thanks for the heads up. > > Pat, > Everyone is different, of course, but I have been on Humira for about 13 months and I am doing better than I have done in years. Humira can't reverse the permanent damage that my joints have suffered thanks to 39 years of PA, but I feel so much less pain and can do so many more things than I could do a year ago. A year ago I couldn't even cut the turkey on my plate on Thanksgiving while this year I'll be helping to cook the feast. The shots sting going in but you only need one every two weeks. I find that letting the meds come to room temperature before I inject as well as freezing the site with a box of frozen peas (frozen corn would work, too, LOL) as well as injecting very slooooowly, all make the shot easier to take AND I have very little itching or site swelling afterwards. > > I hope it is a magic potion for you, too. > Best, > Kathy F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 What made you think that we don't care about ? I have read many many messages with good wishes towards your mother...I'm not sure quite what to say? Crystal >From: brenda stein <leelioness662002@...> >Reply- > >Subject: Re: [ ] Re: Feeling sad >Date: Fri, 19 Nov 2004 04:22:36 -0500 (EST) > > >i see this group has forgotten about my mom brenda its okay she is just a >burden on thisgroup thanks for giving up i never did, she has now had a >stroke and , well im sorry for bothering you all , my mom was dedicated to >this group and others, when i tell her no one cares anymore its gonna >break her heart im sorry for dumping my moms health on this group i will >not post again .. bjorn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 In a message dated 11/22/2004 8:28:33 PM Eastern Standard Time, mickysz@... writes: I can only admire the people I have mentioned and how they cope with this disease in such a way, but I'm not like them I'm feeling that I'm standing at the edge of a crevice that has no ending and I'm just about to fall off! Hi Micky...you are not alone...I am usually pretty upbeat and most days I feel like my coping skills are above average, but then there are those other days, and I think we all have them. This is a horrible disease and it just isn't fair that we have it. There was a TV commercial when I was a kid (I'm now 35) here in the US that was for some cream and it was supposed to help with " the heartbreak of psoriasis, the agony of rosacea " ...and on and on about some other skin diseases. It was very dramatic and my dad and I used to kid around and say " at least its not the heartbreak of psoriasis " ...and then I got psoriasis and PA. And it wasn't so funny anymore! We're all used to it by now, but imagine if you went up to a stranger on the street and just asked them what they thought of a disease that made your skin scale, your joints swell and rapidly deteriorate, your fingernails crack and fall off. They would be completely appalled. I have friends and coworkers who are grateful my nails look better now because just looking at my nails was painful. My point is, PA is awful. There is no sugarcoating it. Personally, even with this group, I don't know if I would be making it through every day without professional help. Don't get me wrong, this group is the BEST thing about having PA. But I needed (and still need) professional counseling to deal with the fact that I am 35, single, and chronically ill. I've grieved for my former life, my career, how this will impact me ever finding a life partner, you name it. And even with this supportive group, the professional counseling, the best rheumatologist I could ask for, there are times that are still dark. Like Orin, the thing that has worked best for me is to channel as much of the negative energy I seem to produce into gaining as much control over this illness as I can...by learning as much as I can about it, reading continuously, experimenting with lifestyle changes, diet changes, exercise programs, you name it. Managing PA is my second career, and a full time job. Gee, I am normally a kind of quick and to the point poster, I don't know what has come over me tonight. I am normally not too touchy-feely on this board (Fran is so good at that) but it is Thanksgiving week here in the US and I have been reflecting on how much having this group has helped me. I am so sorry that all of you have to endure having PA, but so so glad to have all of you in my life. Thank you everyone... This started as a response to Micky and feeling on the edge. Micky, there will be times when all of us are going to be on the edge. Please, please don't fall off...we are all here to pull you back from the brink. I worry so much about Gordon, and about . We need you here with us. PS...when first left the board, I asked him for his contact info so I could help him out by sending him a check. I am ashamed to say I haven't yet done it, but I am going to. For any of you who remember from his many posts and the moderating he did, if you would like to help him, please email me directly. I have his daughter's address - he did not give me his permission to give her address out, but I can send you his last name and my address, and I will forward anything you wish to send to him, even if it is just a letter... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Dear Mickey, I don't know if we have ever corresponded, but I had to write you now. First of all, thank you for the kind words you said about me. All of this praise is going to go to my head, and it catches me off guard every time. I simply do this because I enjoy it and because it helps me feel good to help people. So in a way, I'm being pretty selfish at times. Please don't think that I am never at the end of your crevice. I've been there often and still end up there from time to time. I think we all do if we truly understand the scope and progression of this disease. I got the impression from your email that you didn't want a bunch of " it will get betters " or " hang in there's " so I'm not going to say that to you at all. I don't know if you read a lot, but I'm reading a book now called " A delicate balance, living successfully with chronic illness. " by Milstrey Wells. I got it on Amazon for about $12.00 I think. Anyway, it's not a book full of mind altering news, but it does have a lot of common sense ideas that seem to hit home with me. Try and read it if you can and let me know if you think it helps you at all. I realize tomorrow Mickey, you might be up again and not feeling this low. But it's still a great book to have around if for nothing else, than quick referrals. Just to give you a quick taste of what's in it...It starts out like all of us with ... " the search for the diagnosis, to " is my illness really all in my head " , to finding a doctor, a search for treatments, finding out what makes us feel well, from denial to acceptance and back again, how to be sick in a healthy world, changing the way we look at work, and finally the gift of chronic illness. Needless to say, I've not made it to the end of the book. I do think so many times many of us are thinking of the chapters up above. Sometimes we get stuck in a chapter and spend several years just there alone. Right now you seem to be in acceptance. What hit home with me on this is how often we change from acceptance, to denial, to acceptance, and back again. Basically acceptance isn't about the future, it isn't forever, it isn't about failure, it doesn't mean you are giving up, and it doesn't mean denial. What acceptance means is adapting to change and our constant searching for a balanced life. (Most of this is directly from the book so please don't think I " m too smart here...lol) I wish you were here right now Mickey and I'd just give you my book to read. I know it won't make all your problems go away and it won't change your future. But it can make you feel better about the time you have now, or the time you have that is coming to you. No one ever really knows how long we have, or if they will end up in a wheelchair or dependent on the their families. I've found for me the healthiest way to live is to live for today. The future is too unsure, unclear and not even guaranteed to any of us. We all have today and what we do with it is what makes the difference. I hope I don't sound preachy. It makes me sad to hear you so down, when normally you are the positive one who is always giving great uplifting advice. I know you are just having a rough time, and we all do from time to time. So I'll end there before I tell you to hang on or it will get better...lol. I will say thank you for being so great in our group. You contribute a lot and I always read your emails with great interest. Take care and if I can be of any help in anyway, please write me. Love, Fran [ ] Feeling sad Hi Pat It breaks my heart to hear one of my fellow PA'ers giving up the things she loves just because of this awful disease that we all suffer from. I would love to say that it can be fixed and that you will find the cure you need to get back to work, but as some on here are probably all too aware of, the reality can be a lot worse than even what we first feared when we are first diagnosed. Even the founder of this site is suffering in a big way at the moment with various ailments that no normal person would even begin to understand but despite this she continues to post as much as she is able, and if any of us doubt what can happen to us we only have to remember the posts that Gordon used to send in about the pain that was totally unbearable for him, to the point where he had pretty much constant care. I pray that Gordon is still fighting away over there in Australia and giving the nurses grief as usual, but I fear that all may be lost for Gordon (I really hope not but that may be the reality) Then we have Marti who is a great person and who suffers with the worst form of this disease in such a way that it makes me so proud of her and the way she is still able to joke about it with us. We have Fran who although in a lot of pain herself is always there to give people a hug or some beautifully written post full of real compassion for complete strangers who have posted for the first time. We have Orin who is on a one man mission to make us more knowledgeable about this disease even though he has to bear his daily dose of pain. We have who although in pain is still able to bring a smile into the group at will with one of his one liners and finally we have Kathy who does an excellent job of keeping the politics and religion out of our posts and makes it run so smoothly that we forget that it can be difficult to be a moderator. The reason I say all this is because I have been thinking a lot lately of what the future may hold for me and my family and to be honest I'm quite worried about my prospects. I had started to jog recently and was on such a high that it was almost as if I had never heard of PA, but to my total despair and anger I have gone into another flare up of my ankles and feet! Due to the fact that the jogging has made my joints and tendons so tender that they have come crashing back into my life with a vengeance! I really do think that I have come crashing down to earth with a bump and I am starting to acknowledge that I am gutted! It's like a rollercoaster at the moment and when I reach the top I just come down faster than I got up there as if someone is telling me to just give up!! Forget it you're a loser and that you cannot ever get off the ride no matter what you do and what you take for it! I'm usually so upbeat that it really is a struggle for me to feel like this! I exactly know how Pat is feeling right now because I am there with her stride for stride ( or should I say limp for Limp) I know that people on here will try and cheer me up and say that it will get better and they are probably right, and I have said it to many people before on here so I know that they are right but at the moment I just feel so angry that my genes have caused this to me and that no matter what I try and do eventually the bugger is going to get me ! An old age of Wheelchairs and Walking sticks was not on the agenda when I asked my wife to marry me and I feel so guilty that I have got this bloody disease, sometimes I think she would be better off without me but then she says that is not true and that in sickness and health is what she said and is what she meant. For that I am blessed and for my children I am blessed but today my daughter said she had a pain in her knee that just came on at school so again the guilt kicks in and I curse myself for passing on my faulty genes to my children. It turns out it was just a scrape she got at school but still the guilt is there like a gnawing at the back of my head eating away at my soul ever so slowly. My joints are slowly wearing out I feel and it won't be long before I may have to give up work so another big part of my life will not exist anymore and I get the feeling that if it ever came to that situation then I would be inclined to think that there would be no point anymore in pretending that I am going to live to a ripe old age and that I may miss the best years of my grandchildren's life or worse that I will be there but sitting in a wheelchair a burden to the whole family who has to be fed and changed and helped in and out of bed! God that thought is so scary that It doesn't even bear thinking about for me. I know the new drugs are supposed to make me feel better and that yes maybe they will prolong my healthy lifestyle for another few years but what then? What when they find out that these things are more dangerous than first thought then what then? I would rather die young and have had a great life than to die old and live as an old shrew clinging on to life taking tablets by the bucket load just to get out of my bed... Surely life was not meant to be like this? They say that this is great test of character having this disease and as I feel right now my character is starting to take a hell of a beating! I can only admire the people I have mentioned and how they cope with this disease in such a way, but I'm not like them I'm feeling that I'm standing at the edge of a crevice that has no ending and I'm just about to fall off! I'm not looking for hugs and kisses I'm just in total shock at what a nasty way the cards have been dealt out and I'm not looking for answers or cures I just wanted to put down how I feel at the moment, and that like Pat I just can't get my head around this disease at the moment, I will probably perk up tomorrow when I get a cuddle off of my son or something. Thanks for listening Micky London Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Hi Micky, remember me? i used to be active last year, in fact you and i e- mailed each other for awhile off board.... and share some lighthearted comaraderie... when i was off line for the last year i often thought of you and wondered how you were faring. i read your message before supper, and now that my husband has gone to bed and is softly snoring in the next room i have now returned to your message to try to answer it ... it affected me deeply. as i sit here i keep wondering what i can say that can possibly make a difference... i know very well how much of an upbeat, positive bloke you are... so it is abundantly clear just how badly you are feeling at the moment. saying i'm sorry sounds so trite - but i am, and there's nothing trite about my feelings. you know i so understand the high you were on running - in august i started exercising with a vengeance - my feet and ankles were better so i walked - but couldn't too far so after my walk each day i got on an old second hand bike and started biking about 5 miles a day, day after day, and then my wrists started flaring again. i continued as best i could but then got really sick with bronchitis/sinusitus and couldn't move for 3 weeks. of course i flared - but got right back up again after my round of antibiotics and tried over again. then vioxx was taken off the shelves and i crashed. my crash hasn't been as bad as yours though... but i do understand. i had to quit work 16 months ago because of this blasted disease. i fought it for over 6 months leading up to that time before i finally had to give in to it. thought i was working my way back to the 'land of the living' and could start back to work again, but 2 weeks ago my rheumy actually chuckled (kindly, mind) when i suggested it... and i grieved and ranted and raved when it happened to me all those months ago... because whether it is a family member, or our health, it is a death of something. for us (or at least for me) it is the death of my/our dreams - those rosy ones where everything is perfect. one thing i have found that helps me is to find beauty and wonder in simple things - like that hug you spoke of from your son. i guess what i'm trying to say is that i absolutely refuse to give up on me - if i let this disease control me, them i'm sunk. i refuse to let it - i control it, as best as i can, day to day. i insist on being in control - mentally. of course i have my days - i'm no saint - i get bl**dy sick and tired of the endless pain, the limitations, and being inside a body that refuses to do as i wish - like it has a mind of its own - but if i let my mind go weak, then it wins. i just won't let it. tomorrow there will be a new drug, or a new discovery - like that wonderful one you posted today about the genetic links of psoriasis. there will be, because there absolutely must be. we must never ever give up hope. please give your son and daughter a kiss on their foreheads as they sleep. would you do that for me. and please, don't give up on you, mickey. if you would like to become re-acquainted off line again, i would be honoured to receive any post from you. your long gone, but not lost, friend in vancouver, love, karen > > Hi Pat > > > > It breaks my heart to hear one of my fellow PA'ers giving up the things she > loves just because of this awful disease that we all suffer from. I would > love to say that it can be fixed and that you will find the cure you need to > get back to work, but as some on here are probably all too aware of, the > reality can be a lot worse than even what we first feared when we are first > diagnosed. Even the founder of this site is suffering in a big way > at the moment with various ailments that no normal person would even begin > to understand but despite this she continues to post as much as she is able, > and if any of us doubt what can happen to us we only have to remember the > posts that Gordon used to send in about the pain that was totally unbearable > for him, to the point where he had pretty much constant care. I pray that > Gordon is still fighting away over there in Australia and giving the nurses > grief as usual, but I fear that all may be lost for Gordon (I really hope > not but that may be the reality) Then we have Marti who is a great person > and who suffers with the worst form of this disease in such a way that it > makes me so proud of her and the way she is still able to joke about it with > us. We have Fran who although in a lot of pain herself is always there to > give people a hug or some beautifully written post full of real compassion > for complete strangers who have posted for the first time. We have Orin who > is on a one man mission to make us more knowledgeable about this disease > even though he has to bear his daily dose of pain. We have who > although in pain is still able to bring a smile into the group at will with > one of his one liners and finally we have Kathy who does an excellent job of > keeping the politics and religion out of our posts and makes it run so > smoothly that we forget that it can be difficult to be a moderator. > > > > The reason I say all this is because I have been thinking a lot lately of > what the future may hold for me and my family and to be honest I'm quite > worried about my prospects. I had started to jog recently and was on such a > high that it was almost as if I had never heard of PA, but to my total > despair and anger I have gone into another flare up of my ankles and feet! > Due to the fact that the jogging has made my joints and tendons so tender > that they have come crashing back into my life with a vengeance! I really do > think that I have come crashing down to earth with a bump and I am starting > to acknowledge that I am gutted! It's like a rollercoaster at the moment > and when I reach the top I just come down faster than I got up there as if > someone is telling me to just give up!! Forget it you're a loser and that > you cannot ever get off the ride no matter what you do and what you take for > it! I'm usually so upbeat that it really is a struggle for me to feel like > this! I exactly know how Pat is feeling right now because I am there with > her stride for stride ( or should I say limp for Limp) I know that people on > here will try and cheer me up and say that it will get better and they are > probably right, and I have said it to many people before on here so I know > that they are right but at the moment I just feel so angry that my genes > have caused this to me and that no matter what I try and do eventually the > bugger is going to get me ! An old age of Wheelchairs and Walking sticks > was not on the agenda when I asked my wife to marry me and I feel so guilty > that I have got this bloody disease, sometimes I think she would be better > off without me but then she says that is not true and that in sickness and > health is what she said and is what she meant. For that I am blessed and for > my children I am blessed but today my daughter said she had a pain in her > knee that just came on at school so again the guilt kicks in and I curse > myself for passing on my faulty genes to my children. It turns out it was > just a scrape she got at school but still the guilt is there like a gnawing > at the back of my head eating away at my soul ever so slowly. My joints are > slowly wearing out I feel and it won't be long before I may have to give up > work so another big part of my life will not exist anymore and I get the > feeling that if it ever came to that situation then I would be inclined to > think that there would be no point anymore in pretending that I am going to > live to a ripe old age and that I may miss the best years of my > grandchildren's life or worse that I will be there but sitting in a > wheelchair a burden to the whole family who has to be fed and changed and > helped in and out of bed! God that thought is so scary that It doesn't even > bear thinking about for me. I know the new drugs are supposed to make me > feel better and that yes maybe they will prolong my healthy lifestyle for > another few years but what then? What when they find out that these things > are more dangerous than first thought then what then? I would rather die > young and have had a great life than to die old and live as an old shrew > clinging on to life taking tablets by the bucket load just to get out of my > bed... Surely life was not meant to be like this? They say that this is > great test of character having this disease and as I feel right now my > character is starting to take a hell of a beating! I can only admire the > people I have mentioned and how they cope with this disease in such a way, > but I'm not like them I'm feeling that I'm standing at the edge of a crevice > that has no ending and I'm just about to fall off! > > > > I'm not looking for hugs and kisses I'm just in total shock at what a nasty > way the cards have been dealt out and I'm not looking for answers or cures I > just wanted to put down how I feel at the moment, and that like Pat I just > can't get my head around this disease at the moment, I will probably perk up > tomorrow when I get a cuddle off of my son or something. > > > > Thanks for listening > > > > Micky > > London Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Fran, I don't usually do emotional posts, with border line autistic idental twin 18 year old boys my emotions get a workout there but this post is wonderful and touching. I am ususaly in the anger state of denial. This post reminded me of what this illness has helped me with. Learning to live in the moment when it's good and when it's bad remembering " tomorrow is another day " . Thanks Scarlett and thank you Fran. It is the toughest thing to remember Jerre > > Dear Mickey, I don't know if we have ever corresponded, but I had to write > you now. First of all, thank you for the kind words you said about me. All > of this praise is going to go to my head, and it catches me off guard every > time. I simply do this because I enjoy it and because it helps me feel good > to help people. So in a way, I'm being pretty selfish at times. > > Please don't think that I am never at the end of your crevice. I've been > there often and still end up there from time to time. I think we all do if > we truly understand the scope and progression of this disease. I got the > impression from your email that you didn't want a bunch of " it will get > betters " or " hang in there's " so I'm not going to say that to you at all. > > I don't know if you read a lot, but I'm reading a book now called " A > delicate balance, living successfully with chronic illness. " by > Milstrey Wells. I got it on Amazon for about $12.00 I think. Anyway, it's > not a book full of mind altering news, but it does have a lot of common > sense ideas that seem to hit home with me. Try and read it if you can and > let me know if you think it helps you at all. I realize tomorrow Mickey, > you might be up again and not feeling this low. But it's still a great book > to have around if for nothing else, than quick referrals. Just to give you > a quick taste of what's in it...It starts out like all of us with ... " the > search for the diagnosis, to " is my illness really all in my head " , to > finding a doctor, a search for treatments, finding out what makes us feel > well, from denial to acceptance and back again, how to be sick in a healthy > world, changing the way we look at work, and finally the gift of chronic > illness. Needless to say, I've not made it to the end of the book. > > I do think so many times many of us are thinking of the chapters up above. > Sometimes we get stuck in a chapter and spend several years just there > alone. Right now you seem to be in acceptance. What hit home with me on > this is how often we change from acceptance, to denial, to acceptance, and > back again. Basically acceptance isn't about the future, it isn't forever, > it isn't about failure, it doesn't mean you are giving up, and it doesn't > mean denial. What acceptance means is adapting to change and our constant > searching for a balanced life. (Most of this is directly from the book so > please don't think I " m too smart here...lol) I wish you were here right now > Mickey and I'd just give you my book to read. I know it won't make all your > problems go away and it won't change your future. But it can make you feel > better about the time you have now, or the time you have that is coming to > you. > > No one ever really knows how long we have, or if they will end up in a > wheelchair or dependent on the their families. I've found for me the > healthiest way to live is to live for today. The future is too unsure, > unclear and not even guaranteed to any of us. We all have today and what we > do with it is what makes the difference. I hope I don't sound preachy. It > makes me sad to hear you so down, when normally you are the positive one who > is always giving great uplifting advice. I know you are just having a rough > time, and we all do from time to time. So I'll end there before I tell you > to hang on or it will get better...lol. > > I will say thank you for being so great in our group. You contribute a lot > and I always read your emails with great interest. Take care and if I can > be of any help in anyway, please write me. Love, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 I'm jumping on the Fran-wagon here (hee hee) Yesterday was a bad day for me. I was feeling really down, really defeated, and in alot of pain. I was asking myself why a young, vivacious, positive person had to live in a broken body, and in a way I'm still asking myself that today. Then I realize how well I really have it at the moment. I've only been recently diagnosed, and though I deal with alot of pain, I don't think mine is anywhere near as extreme as alot of people on this board. I don't have any deformed digits, I dont have any bone disintigration, I'm still walking, and my P is still only on my scalp (well except for a couple of tic-tac sized bits here and there on my body). As far as I know, I only have P and PA, since I haven't been looking into this for very long, although when I go to see the new Rhumy on the 20th of Dec, I'll be asking her about other things as well, considering my back is almost always in some state of pain. When I went to the first Rhumy, he just said my thumbs and my collarbone was affected(but he was a jerk, so I don't believe him). I had no idea, before I found this informative board, that it could affect so many other parts, and now I wonder if the pain i've had in my back for so long might be something other than just a bone out. I'm not sure what kind of questions I should ask the new Rhumy, I was pretty clueless when I went to see my first one. any suggestions? So back to you, Fran. You are a rock here. Every post of yours has been full of confidence and encouragement, and so informative. You have to be one of the most compassionate people I've encountered on the net. You seem to put yourself in the place of every poster, and reply accordingly. I hope that after having this disease for as long as some of the people here have, that I still have your strength and compassion. Thank you. Love and light Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Dear Crystal, Gee you really embarrassed me on this one, but thank you so much. I feel the same way you do that when I'm down and just sick and tired of being sick, I read about someone else, like the last two people I wrote to, and I think " Shoot, I don't have it that bad at all...lol " . I know I can't keep that thought going forever and I relapse like everyone else and give into self pity from time to time. This group is great for bringing us back to reality and helping us to see the big picture. That doesn't lessen your pain or mine. Today I had a spell when I was ready to cry because my hands hurt so bad from dusting! How stupid is that! First of all, that they would even hurt from something that light and then I felt really stupid since house work is normally at the bottom of my list of things I care about. Don't get me wrong, I love a clean house, but I realized really quickly when I got sick, that my house was the first thing to go...lol. Of course, I drive my husband nuts, since he always says everything is fine and I'm over reacting. Things don't bother him until they start to smell...lol. (He would shoot me for that last remark..) Anyway, I'm off track. Looking back now at my almost crying it seems so silly. Of course my hands hurt like hell, but they always do if I do anything. I'm so glad you are seeing a new doctor. It's just a waste of time to spend money and your health on someone who doesn't care or isn't up to date on PA. As far as questions go, I would bring a notebook and write it all down. Ask him how many PA patients does he treat and what is his success rate? Doctors love to brag anyway...lol. Be sure and tell him about everywhere that hurts. I would tell him the last doctor you saw dismissed your concerns and you need a doctor who is willing to answer some questions and give you some support. I don't know what medications you are on, but go over all of them with him and make sure he knows of anything you currently take for anything else. I would ask him to at the very least X-ray your back since it is hurting all the time. He might be able to tell from examining you where the pain is coming from, but at least a X-ray will show if there is some damage. (Some of the time it shows up on X-ray, a MRI is much better of course, but they rarely want to start with those.) I would discuss pain control with him. Let him know that you don't plan to become a junkie, but you do want and have the right to live your life with the least amount of pain possible. If he can't prescribe pain medications, then ask him to refer you to pain management doctor. Even if you don't need to see one now, you'll have their name in case you need one in the future. I guess that's about it. I'm sure other members will think of better things to ask. It's not easy to get it all in a quick appointment. But I've found with a note pad, my doctors always let me at least finish my list. (They might be tapping their toes, but they don't walk out until I done...lol.) Be sure and let us know how it goes Crystal. I hope you have a great appointment and this doctor can get you started on the right path. Thanks again for being so kind in your email. It makes it all worthwhile to know that my email has helped someone. Take care and have a wonderful holiday. Love, Fran PS You seem extremely compassionate to me already. ----Original Message----- From: Turrelle LaMere [mailto:turrelle@...] Sent: Tuesday, November 23, 2004 3:07 PM Subject: RE: [ ] Feeling sad I'm jumping on the Fran-wagon here (hee hee) Yesterday was a bad day for me. I was feeling really down, really defeated, and in alot of pain. I was asking myself why a young, vivacious, positive person had to live in a broken body, and in a way I'm still asking myself that today. Then I realize how well I really have it at the moment. I've only been recently diagnosed, and though I deal with alot of pain, I don't think mine is anywhere near as extreme as alot of people on this board. I don't have any deformed digits, I dont have any bone disintigration, I'm still walking, and my P is still only on my scalp (well except for a couple of tic-tac sized bits here and there on my body). As far as I know, I only have P and PA, since I haven't been looking into this for very long, although when I go to see the new Rhumy on the 20th of Dec, I'll be asking her about other things as well, considering my back is almost always in some state of pain. When I went to the first Rhumy, he just said my thumbs and my collarbone was affected(but he was a jerk, so I don't believe him). I had no idea, before I found this informative board, that it could affect so many other parts, and now I wonder if the pain i've had in my back for so long might be something other than just a bone out. I'm not sure what kind of questions I should ask the new Rhumy, I was pretty clueless when I went to see my first one. any suggestions? So back to you, Fran. You are a rock here. Every post of yours has been full of confidence and encouragement, and so informative. You have to be one of the most compassionate people I've encountered on the net. You seem to put yourself in the place of every poster, and reply accordingly. I hope that after having this disease for as long as some of the people here have, that I still have your strength and compassion. Thank you. Love and light Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 dear dear mickey, darn you - I'm now in tears... and this isn't going to be one of my upbeat, encouraging messages because for me, as well, things haven't been going well lately, and today has been BAD.... i'm in a major flare. i feel like i've been hit by a mac truck - broadsided.. and all your anger mickey, its my anger as well.... i think it's now starting in my spine, the pain is awful. i'm limping like crazy, hurt everywhere. i typed too much yesterday and my wrists have flared so badly i have knife-like jabs running up my arms past my elbows - rhythmically, with each heart-beat - i guess the nerves are being pinched from the inflamation. my ankles and feet feel like i've got knives jabbing into them and i just ache, everywhere. it was so nice of you to welcome me back, mickey - i've miss you, and i was so touched when you said i was a ray of sunshine - that just made the tears flow more.... i certainly don't feel like any ray at the moment. i wish there was something i could say that could help you, help us all - i can't - but what i will say is something i said yesterday on the other smaller pa board i also belong to - ....although i can no longer rush around in the fast lane, there is a silver lining. i now have the time to recognize and enjoy the little things - a beautiful sunset, a flock of Canada Geese lifting off the lake where i live and joining together in a " V " formation - in fact, when i see the " V " i think of this group - we are a " V " that supports each other. as with Canada Geese, when the lead goose gets tired, one at the back surges forward and leads the way to give the first goose a break - so do we here. each and every one of us has a period of time where everything seems hopeless and the pain and frustration is overwhelming. by sharing our feelings here, we are comforted by other people who truly understand, as no one else can... none of us knows what tomorrow will bring, and yes, we've been really given a raw deal, but thank goodness we have each other - this board is my life line, my means of centering myself, of getting my mind off myself - as dear Fran said, it is a symbiotic relationship, and when i read of success stories, it is also a source of hope. no matter how hard it gets, i won't allow myself to lose it. sorry for the glum message guys, love you, karen > > Such support from such wonderful people is so much appreciated; I feel I am > letting the board down by being so damn down!! But if I'm honest I still > feel that way despite such great ideas and support from my dear friends on > here. What I said yesterday and what I still feel today is so much bloody > anger .at myself, at the world and at this horrible, horrible disease! > > > > I once wrote a poem about PA and I read it last night as I was posting and > it was so damn bloody true! The bit about being on a ride and wanting to get > off! The only people who understand what I am going through right now are > you guys.. I try and speak to my wife and It's the classic line of it will > get better with those new drugs, and yes it's not her fault that she does > not understand what I am feeling like at the moment, she's never had PA so > how would she know?. She tries to give me as much support as she can and I > love her for it, but what I'm trying to say is that I'm a human being I Feel > like such a failure. > > > > I've tried all the usual routes with this disease like different drugs, > different outlook, different diet, different cream, different exercise, > different rest, different Alcohol intake, different shampoo, different > bloody everything, and at the end of the day nothing seems to slow down this > thing that we all endure on a daily basis. I'm not a quitter and from day > one have made that my number one rule with this thing, but I'm not superman > I haven't got magic powers that will take all this away from me. I'm a > simple bloke just trying to get through this life of ours and bring up my > children to respect their peers and elders. I really think I have reached a > crossroads in my life and that the old Micky that I loved has been replaced > with a sad old shadow of his former self. > > Suicide is not an option. no matter how bad I get I know that I could never > do that to my family, but isn't it bizarre to think that I have actually > resented the fact that I have a family because in this warped state that > this PA brings on I actually think I would have done it by now if I was On > my own.. Maybe that makes me weak, I'm not sure and at the end of the day it > was only a thought. but god don't I just hate this disease for making me > even think like that!! Is probably right about the counselling thing > and maybe it is because I'm only 32 that this thing is dragging me down If I > had been say 50 or over maybe I could except it more and just take it in my > stride, and again like I'm not usually the touchy feely type poster > and hence why I said I didn't want a bunch of it will get better or hang in > there type responses > > Maybe that is they key, maybe because of my age it's just so damn hard to > accept. I can't get the picture out of my head of Gordon and his suffering > without being so damn angry. Maybe that is what has prompted me to post > about all this, maybe people asking about Gordon has made me put two and two > together and get Five! I don't know. And the fact that is no longer > posting because of his own problems with this painful disease has made me > think as well.. He usually put me in my place if I ever got on the pity pot > like now. He's like a Sergeant Major who is for ever geeing up the posters > about the good things in life etc. I miss that... > > I've taken on board Fran's kind words about denial and acceptance and denial > again and can't help feeling that I know she is right but it doesn't stop me > being so fed up! I do read a lot Fran, and maybe I will get that book but > just the fact of buying it is making me think that I'm losing the plot with > this PA or that I'm some kind of failure, and that I need to take some > Prozac or something. I do hope for the sanity of this board that I do cheer > up sometime soon, or I think I could find myself being kicked off for being > to bloody depressed and bringing everyone down with me. That's what I hate > the most. is that this PA has power over my emotions and how I feel on a day > to day and hour to hour and even a minute to minute basis. And maybe I > should just accept what the cards have dealt me and get on with it but at > the moment I'm actually happy being miserable and angry about this (if that > makes sense?) I'm usually the first one to argue for someone if I feel a > wrong has been done or if I think they need a kick up the backside. But > where does that leave myself with this PA who do I argue with? I'm not very > religious so I can't ask the man upstairs? I'm finding that I want to scream > and say no more!!! But what help is that going to be? I can't argue with > myself can I? > > > > .so that leaves you poor folks and this message board where often I have > seen people Vent on here and I think I'm in the middle of a big one! > > > > It was good to see that is back posting on this board that's one ray > of light in this dark chapter of mine and I'm sorry we meet again when I am > so fed up, and like I have tried to control this thing and not let it > get to me, but I feel like one of those big Dams that was holding everything > back and now I have a little crack in that wall and that the whole god damn > thing is going to collapse on my head. Does that make sense? Hope is a good > thing , and your words are up-lifting, but at the end of the day it's > only a word. Like I hope it doesn't rain tomorrow but it inevitably will or > like I hope the grass is greener when inevitably it isn't.. I'm sorry to > burden people with my feelings, but this is the only place I know that will > let me do that, that is apart from taking it out on my family and friends > and losing them as well in addition to all the other things I have lost in > my life recently due to PA. > > > > Thanks for enduring > > > > Micky > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 --- Dear , You are in my thoughts and prayers-I feel bad for you with your awful flare-I had terrible sickness this past weekend and have had two wonderful days afterward. I really live for those good days. God Bless, Sue. In , " " <missionblondie@y...> wrote: > > > dear dear mickey, > > darn you - I'm now in tears... and this isn't going to be one of my > upbeat, encouraging messages because for me, as well, things haven't > been going well lately, and today has been BAD.... i'm in a major > flare. i feel like i've been hit by a mac truck - broadsided.. and > all your anger mickey, its my anger as well.... i think it's now > starting in my spine, the pain is awful. i'm limping like crazy, > hurt everywhere. i typed too much yesterday and my wrists have > flared so badly i have knife-like jabs running up my arms past my > elbows - rhythmically, with each heart-beat - i guess the nerves are > being pinched from the inflamation. my ankles and feet feel like > i've got knives jabbing into them and i just ache, everywhere. > > it was so nice of you to welcome me back, mickey - i've miss you, > and i was so touched when you said i was a ray of sunshine - that > just made the tears flow more.... i certainly don't feel like any > ray at the moment. i wish there was something i could say that > could help you, help us all - i can't - but what i will say is > something i said yesterday on the other smaller pa board i also > belong to - > > ...although i can no longer rush around in the fast lane, there is a > silver lining. i now have the time to recognize and > enjoy the little things - a beautiful sunset, a flock of Canada > Geese lifting off the lake where i live and joining together in > a " V " formation - in fact, when i see the " V " i think of this group - > we are a " V " that supports each other. as with Canada Geese, when > the lead goose gets tired, one at the back surges forward and leads > the way to give the first goose a break - so do we here. each and > every one of us has a period of time where everything seems hopeless > and the pain and frustration is overwhelming. by sharing our > feelings here, we are comforted by other people who truly > understand, as no one else can... > > none of us knows what tomorrow will bring, and yes, we've been > really given a raw deal, but thank goodness we have each other - > this board is my life line, my means of centering myself, of getting > my mind off myself - as dear Fran said, it is a symbiotic > relationship, and when i read of success stories, it is also a > source of hope. no matter how hard it gets, i won't allow myself to > lose it. > > sorry for the glum message guys, > > love you, > > karen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Thank you for your suggestions, Fran, and I'd glad I embarassed you in this way you deserve kind words after all the ones you have offered so freely. I've printed out your suggestions, and will keep them handy when I see the doc. I've got a little notebook all ready for my list of questions and concerns. Thanks again love and light Crystal >From: " Fran Mishler " <fran@...> >Reply- >< > >Subject: RE: [ ] Feeling sad >Date: Tue, 23 Nov 2004 18:01:16 -0500 > > >Dear Crystal, Gee you really embarrassed me on this one, but thank you so >much. I feel the same way you do that when I'm down and just sick and >tired >of being sick, I read about someone else, like the last two people I wrote >to, and I think " Shoot, I don't have it that bad at all...lol " . I know I >can't keep that thought going forever and I relapse like everyone else and >give into self pity from time to time. This group is great for bringing us >back to reality and helping us to see the big picture. > >That doesn't lessen your pain or mine. Today I had a spell when I was >ready >to cry because my hands hurt so bad from dusting! How stupid is that! >First of all, that they would even hurt from something that light and then >I >felt really stupid since house work is normally at the bottom of my list of >things I care about. Don't get me wrong, I love a clean house, but I >realized really quickly when I got sick, that my house was the first thing >to go...lol. Of course, I drive my husband nuts, since he always says >everything is fine and I'm over reacting. Things don't bother him until >they start to smell...lol. (He would shoot me for that last remark..) >Anyway, I'm off track. Looking back now at my almost crying it seems so >silly. Of course my hands hurt like hell, but they always do if I do >anything. > >I'm so glad you are seeing a new doctor. It's just a waste of time to >spend >money and your health on someone who doesn't care or isn't up to date on >PA. >As far as questions go, I would bring a notebook and write it all down. >Ask >him how many PA patients does he treat and what is his success rate? >Doctors love to brag anyway...lol. Be sure and tell him about everywhere >that hurts. I would tell him the last doctor you saw dismissed your >concerns and you need a doctor who is willing to answer some questions and >give you some support. I don't know what medications you are on, but go >over all of them with him and make sure he knows of anything you currently >take for anything else. I would ask him to at the very least X-ray your >back since it is hurting all the time. He might be able to tell from >examining you where the pain is coming from, but at least a X-ray will show >if there is some damage. (Some of the time it shows up on X-ray, a MRI is >much better of course, but they rarely want to start with those.) I would >discuss pain control with him. Let him know that you don't plan to become >a >junkie, but you do want and have the right to live your life with the least >amount of pain possible. If he can't prescribe pain medications, then ask >him to refer you to pain management doctor. Even if you don't need to see >one now, you'll have their name in case you need one in the future. I >guess >that's about it. I'm sure other members will think of better things to >ask. >It's not easy to get it all in a quick appointment. But I've found with a >note pad, my doctors always let me at least finish my list. (They might be >tapping their toes, but they don't walk out until I done...lol.) > >Be sure and let us know how it goes Crystal. I hope you have a great >appointment and this doctor can get you started on the right path. Thanks >again for being so kind in your email. It makes it all worthwhile to know >that my email has helped someone. > >Take care and have a wonderful holiday. Love, Fran PS You seem >extremely >compassionate to me already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hey Micky... Sorry things are still in the same state... I just wanted to comment on a couple of things you mentioned. One is, it is ABSOLUTELY true that we as humans have a strong desire to be " happy " when we are unhappy. We do derive a great amount of energy from this ~ negative of course, but it gives us a sense of strength and power ~ and yes, we even feel better in one way, but much worse, deep down, inside. This might be a little too far out there for some, but I read a saying once: " We are not human beings having a spiritual experience. We are spiritual beings having a human experience. " I very much do not want to come across as preaching, but maybe now that you have noticed this, try to watch yourself and detirmine if what is gained (a feeling of energy, strength, happiness) is worth what is being lost (real huge amounts of energy, and deeper happiness). Often when I am in this state, I feed my depression and anger in all kinds of ways, from how I hold my body (slumped, fists and jaws clenched, anxious ~ jerky movements) and I won't even allow my mind to think of positive or happy thoughts ~ it's as if being happy is a betral to what has been done to me... But, if somehow, I can break free (don't clench my jaw or fists, stand up straight, breath deep and remember good things, watch my child, hug your partner, watch the sunrise or sunset, etc...) ~ a breath of fresh air can start to creep in where there is now so much depression and anger. Easy to say, very, very hard to do ~ but it does help me once I see that I seem to need to be angry... The other is, sometimes, medication is the answer. It doesn't mean it will be the answer forever or that you have failed, only that your body ~ with all that is happening and all the medications, is out of balance. Prozac, or any of the others can and do help. Anyway, I do hope the " light in your heart " comes back... Best Wishes, (idaho) michael szczygiel <mickysz@...> wrote: Such support from such wonderful people is so much appreciated; I feel I am letting the board down by being so damn down!! But if I'm honest I still feel that way despite such great ideas and support from my dear friends on here. What I said yesterday and what I still feel today is so much bloody anger .at myself, at the world and at this horrible, horrible disease! I once wrote a poem about PA and I read it last night as I was posting and it was so damn bloody true! The bit about being on a ride and wanting to get off! The only people who understand what I am going through right now are you guys.. I try and speak to my wife and It's the classic line of it will get better with those new drugs, and yes it's not her fault that she does not understand what I am feeling like at the moment, she's never had PA so how would she know?. She tries to give me as much support as she can and I love her for it, but what I'm trying to say is that I'm a human being I Feel like such a failure. I've tried all the usual routes with this disease like different drugs, different outlook, different diet, different cream, different exercise, different rest, different Alcohol intake, different shampoo, different bloody everything, and at the end of the day nothing seems to slow down this thing that we all endure on a daily basis. I'm not a quitter and from day one have made that my number one rule with this thing, but I'm not superman I haven't got magic powers that will take all this away from me. I'm a simple bloke just trying to get through this life of ours and bring up my children to respect their peers and elders. I really think I have reached a crossroads in my life and that the old Micky that I loved has been replaced with a sad old shadow of his former self. Suicide is not an option. no matter how bad I get I know that I could never do that to my family, but isn't it bizarre to think that I have actually resented the fact that I have a family because in this warped state that this PA brings on I actually think I would have done it by now if I was On my own.. Maybe that makes me weak, I'm not sure and at the end of the day it was only a thought. but god don't I just hate this disease for making me even think like that!! Is probably right about the counselling thing and maybe it is because I'm only 32 that this thing is dragging me down If I had been say 50 or over maybe I could except it more and just take it in my stride, and again like I'm not usually the touchy feely type poster and hence why I said I didn't want a bunch of it will get better or hang in there type responses Maybe that is they key, maybe because of my age it's just so damn hard to accept. I can't get the picture out of my head of Gordon and his suffering without being so damn angry. Maybe that is what has prompted me to post about all this, maybe people asking about Gordon has made me put two and two together and get Five! I don't know. And the fact that is no longer posting because of his own problems with this painful disease has made me think as well.. He usually put me in my place if I ever got on the pity pot like now. He's like a Sergeant Major who is for ever geeing up the posters about the good things in life etc. I miss that... I've taken on board Fran's kind words about denial and acceptance and denial again and can't help feeling that I know she is right but it doesn't stop me being so fed up! I do read a lot Fran, and maybe I will get that book but just the fact of buying it is making me think that I'm losing the plot with this PA or that I'm some kind of failure, and that I need to take some Prozac or something. I do hope for the sanity of this board that I do cheer up sometime soon, or I think I could find myself being kicked off for being to bloody depressed and bringing everyone down with me. That's what I hate the most. is that this PA has power over my emotions and how I feel on a day to day and hour to hour and even a minute to minute basis. And maybe I should just accept what the cards have dealt me and get on with it but at the moment I'm actually happy being miserable and angry about this (if that makes sense?) I'm usually the first one to argue for someone if I feel a wrong has been done or if I think they need a kick up the backside. But where does that leave myself with this PA who do I argue with? I'm not very religious so I can't ask the man upstairs? I'm finding that I want to scream and say no more!!! But what help is that going to be? I can't argue with myself can I? ..so that leaves you poor folks and this message board where often I have seen people Vent on here and I think I'm in the middle of a big one! It was good to see that is back posting on this board that's one ray of light in this dark chapter of mine and I'm sorry we meet again when I am so fed up, and like I have tried to control this thing and not let it get to me, but I feel like one of those big Dams that was holding everything back and now I have a little crack in that wall and that the whole god damn thing is going to collapse on my head. Does that make sense? Hope is a good thing , and your words are up-lifting, but at the end of the day it's only a word. Like I hope it doesn't rain tomorrow but it inevitably will or like I hope the grass is greener when inevitably it isn't.. I'm sorry to burden people with my feelings, but this is the only place I know that will let me do that, that is apart from taking it out on my family and friends and losing them as well in addition to all the other things I have lost in my life recently due to PA. Thanks for enduring Micky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 In a message dated 11/23/2004 9:34:42 PM Eastern Standard Time, mickysz@... writes: ..so that leaves you poor folks and this message board where often I have seen people Vent on here and I think I'm in the middle of a big one! Hi Micky, I know where you are coming from because I often feel the same way as you do. Why me? Your post has really touched me. I can't even keep up with all these postings because I don't have the concentration to read on the computer that much. This illness has robbed many things from my life as well. My ability to move around freely without pain is always there. I had to give up my job as a medical assistant and at the same time stop education towards my nursing degree. Many people don't understand what we are going through. Even though they try, they do not walk or in our case hobble in out footsteps. I have been extremely down like yourself and then will pull out of it again. Just remember we all care about you here and vent as often as you like. Tomorrow is Thanksgiving and if there is anything I am thankful for, it is for all of my dear friends here on the board. Don't give up MIcky. FIGHT!!!! If it is counceling then go for it or a possible anti-depressent may help. Hang in there because it is possible that they will soon come out with a new drug that is the answer soon. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hi Micky, I have been offline so just read your second message, missed the first. anyway...sorry things are so bad for you at present. i still go through angry stages occasionally after 37 years. What would D. say?? Have you tried MTX? He is fond of it, I know Regarding Gordon, or severity of pa, maybe closer to the point...we don't know the future but we do know that Gordon and are unfortunate to have some of the most severe cases of pa...odds are most of us will not be asked to suffer to the extent that they have. and would definitely tell you to...fight the good fight.....which I am sure he is doing right now. He always pointed out that people who refused to give in to it had the best outcomes. I am glad to see back too....she is indeed a light for us. well take care....this too shall pass, Marti > > Such support from such wonderful people is so much appreciated; I feel I am > letting the board down by being so damn down!! But if I'm honest I still > feel that way despite such great ideas and support from my dear friends on > here. What I said yesterday and what I still feel today is so much bloody > anger .at myself, at the world and at this horrible, horrible disease! > > > > I once wrote a poem about PA and I read it last night as I was posting and > it was so damn bloody true! The bit about being on a ride and wanting to get > off! The only people who understand what I am going through right now are > you guys.. I try and speak to my wife and It's the classic line of it will > get better with those new drugs, and yes it's not her fault that she does > not understand what I am feeling like at the moment, she's never had PA so > how would she know?. She tries to give me as much support as she can and I > love her for it, but what I'm trying to say is that I'm a human being I Feel > like such a failure. > > > > I've tried all the usual routes with this disease like different drugs, > different outlook, different diet, different cream, different exercise, > different rest, different Alcohol intake, different shampoo, different > bloody everything, and at the end of the day nothing seems to slow down this > thing that we all endure on a daily basis. I'm not a quitter and from day > one have made that my number one rule with this thing, but I'm not superman > I haven't got magic powers that will take all this away from me. I'm a > simple bloke just trying to get through this life of ours and bring up my > children to respect their peers and elders. I really think I have reached a > crossroads in my life and that the old Micky that I loved has been replaced > with a sad old shadow of his former self. > > Suicide is not an option. no matter how bad I get I know that I could never > do that to my family, but isn't it bizarre to think that I have actually > resented the fact that I have a family because in this warped state that > this PA brings on I actually think I would have done it by now if I was On > my own.. Maybe that makes me weak, I'm not sure and at the end of the day it > was only a thought. but god don't I just hate this disease for making me > even think like that!! Is probably right about the counselling thing > and maybe it is because I'm only 32 that this thing is dragging me down If I > had been say 50 or over maybe I could except it more and just take it in my > stride, and again like I'm not usually the touchy feely type poster > and hence why I said I didn't want a bunch of it will get better or hang in > there type responses > > Maybe that is they key, maybe because of my age it's just so damn hard to > accept. I can't get the picture out of my head of Gordon and his suffering > without being so damn angry. Maybe that is what has prompted me to post > about all this, maybe people asking about Gordon has made me put two and two > together and get Five! I don't know. And the fact that is no longer > posting because of his own problems with this painful disease has made me > think as well.. He usually put me in my place if I ever got on the pity pot > like now. He's like a Sergeant Major who is for ever geeing up the posters > about the good things in life etc. I miss that... > > I've taken on board Fran's kind words about denial and acceptance and denial > again and can't help feeling that I know she is right but it doesn't stop me > being so fed up! I do read a lot Fran, and maybe I will get that book but > just the fact of buying it is making me think that I'm losing the plot with > this PA or that I'm some kind of failure, and that I need to take some > Prozac or something. I do hope for the sanity of this board that I do cheer > up sometime soon, or I think I could find myself being kicked off for being > to bloody depressed and bringing everyone down with me. That's what I hate > the most. is that this PA has power over my emotions and how I feel on a day > to day and hour to hour and even a minute to minute basis. And maybe I > should just accept what the cards have dealt me and get on with it but at > the moment I'm actually happy being miserable and angry about this (if that > makes sense?) I'm usually the first one to argue for someone if I feel a > wrong has been done or if I think they need a kick up the backside. But > where does that leave myself with this PA who do I argue with? I'm not very > religious so I can't ask the man upstairs? I'm finding that I want to scream > and say no more!!! But what help is that going to be? I can't argue with > myself can I? > > > > .so that leaves you poor folks and this message board where often I have > seen people Vent on here and I think I'm in the middle of a big one! > > > > It was good to see that is back posting on this board that's one ray > of light in this dark chapter of mine and I'm sorry we meet again when I am > so fed up, and like I have tried to control this thing and not let it > get to me, but I feel like one of those big Dams that was holding everything > back and now I have a little crack in that wall and that the whole god damn > thing is going to collapse on my head. Does that make sense? Hope is a good > thing , and your words are up-lifting, but at the end of the day it's > only a word. Like I hope it doesn't rain tomorrow but it inevitably will or > like I hope the grass is greener when inevitably it isn't.. I'm sorry to > burden people with my feelings, but this is the only place I know that will > let me do that, that is apart from taking it out on my family and friends > and losing them as well in addition to all the other things I have lost in > my life recently due to PA. > > > > Thanks for enduring > > > > Micky > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hi , oh no....sorry you are flared too. Are all of us? I am definitely hurting more than usual.i tend to blame the weather but today my doc thought it was stress..they both factor in for me. feel better, Marti > > > dear dear mickey, > > darn you - I'm now in tears... and this isn't going to be one of my > upbeat, encouraging messages because for me, as well, things haven't > been going well lately, and today has been BAD.... i'm in a major > flare. i feel like i've been hit by a mac truck - broadsided.. and > all your anger mickey, its my anger as well.... i think it's now > starting in my spine, the pain is awful. i'm limping like crazy, > hurt everywhere. i typed too much yesterday and my wrists have > flared so badly i have knife-like jabs running up my arms past my > elbows - rhythmically, with each heart-beat - i guess the nerves are > being pinched from the inflamation. my ankles and feet feel like > i've got knives jabbing into them and i just ache, everywhere. > > it was so nice of you to welcome me back, mickey - i've miss you, > and i was so touched when you said i was a ray of sunshine - that > just made the tears flow more.... i certainly don't feel like any > ray at the moment. i wish there was something i could say that > could help you, help us all - i can't - but what i will say is > something i said yesterday on the other smaller pa board i also > belong to - > > ...although i can no longer rush around in the fast lane, there is a > silver lining. i now have the time to recognize and > enjoy the little things - a beautiful sunset, a flock of Canada > Geese lifting off the lake where i live and joining together in > a " V " formation - in fact, when i see the " V " i think of this group - > we are a " V " that supports each other. as with Canada Geese, when > the lead goose gets tired, one at the back surges forward and leads > the way to give the first goose a break - so do we here. each and > every one of us has a period of time where everything seems hopeless > and the pain and frustration is overwhelming. by sharing our > feelings here, we are comforted by other people who truly > understand, as no one else can... > > none of us knows what tomorrow will bring, and yes, we've been > really given a raw deal, but thank goodness we have each other - > this board is my life line, my means of centering myself, of getting > my mind off myself - as dear Fran said, it is a symbiotic > relationship, and when i read of success stories, it is also a > source of hope. no matter how hard it gets, i won't allow myself to > lose it. > > sorry for the glum message guys, > > love you, > > karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Hi Pat, I just wanted to say I hope that you are coping ok with not working and your online college course is keeping you occupied. I had to go on to LTD at the beginning of this year and I am thinking of doing something at College in the future. I know it was a big step you took to stop working but it just gets to the stage where you are only doing yourself more harm by turning up every day. So, good luck to you. Take care, Quote Link to comment Share on other sites More sharing options...
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