Replies to 'Living with Chronic Pain'
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July 25, 2005, 8:08 am PDT
 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (Iworked fornearly 40 years before being diagnosed)and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. I am 55 and just (2 months ago) diagnosed with Scoriatic Arthritis. I get some of the same responses. My husband just can't believe that I am in pain almost constantly or that the medications make me sick/dizzy. The RA doctor seems to think I've had this for years and that it was just misdiagnosed. In the meantime, I'm dealing with severe depression. I'll send you my prayers and thanks for writing about constant pain.
Sandy |
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September 24, 2005, 5:23 pm PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. My husband who will be 46 next week was finally diagnosed with RA about 2 yrs ago. Since receiving the proper diagnosis life has gotten much better. Prior to his diagnosis though we were living a nightmare. It broke my heart to have to sit by and watch my strong husband be reduced to tears and not know what was wrong or how to help. For about three years we had no idea what was happening. There were many days when the disease got the best of him physically, but he was always able to maintain his awesome "no worries " outlook. I truly believe that is what kept us all sane. First we were told there was nothing wrong - big mystery. Then it was Lyme so why not pump him up with a rocephin IV. Turns out not lyme at all. I hate to even think about the unecessary drugs that were pumped into him. Finally and happily he went on remicade and that work wonders for quite awhile - over a year I think. He was his old self and feeling good. Then he seemed to build up an immunity to that and has since switched to Humira and again all is well. No flare up and working steadily. We will just continue to take it one day at a time and do all we can to keep him feeling well. I have to mention that through it all my husband has been an amazing person who never really let the illness get the best of him "mentally". Even when he couldn't move without unbearable pain he never really let it get to him. He has been an inspiration to me and a wondeful example to our children. He is our hero and will will stand beside him no matter where this miserable disease takes our family. Good luck to all. |
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January 3, 2006, 5:51 am PST
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Your not alone. I have had RA for 15 years. I'm 49 and walk like I'm 100. When the doctor first told me I had it in my hands. He gave me meds and it went away. I was young and didn't understand how bad this gets. Wow I know now. My husband is great. He helps me as much as he can. I have four kids that try to help. But you know how kids are, they love to leave a mess and say I'll get it later. My family loves to make jokes about it, like wheres your wheel chair and hey cripple. When they leave I cry. I don't go to anything with the family anymore because I hate what they say and the way they look at me. We had 4 wedding last year and because I have trouble getting dressed and I can't wear shoes(only sneakers) I didn't go. Most of the time I stay in the house. Forget working. But like you said I try to keep a smile on my face and do whatever I can during the day. I try not to think about all these meds I'm on and how scared I am everytime I have to take them. Just keep telling myself that someday they might start working on this pain. You have a good day and keep smiling. God bless. |
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August 23, 2006, 7:50 pm PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Well we all have to vent sometimes. Hi I am 58 years old too and have chronic CFS and Fibromyalgia I live everyday in pain I had to give up my work and my skin is so sore even to touch. I try and do things for my family because I always have but just pushing myself takes such a toll on my body and mind. they all love me I know that but they don't realize just how bad the pain is. It's like having a bad case of the flu every day of your life. I want so much to be able to walk and do things like I used to do but it is impossible. i am over weight and I worry because I can't excersise like I used too. My heart and mind want to but my body just can't hold out. You are right God is good and has blessed me in so many ways. Prayer I believe can move mountains so I am believing in prayer that God will touch you and make you better. I think that depression has fueled my problem. I am easy going and will hold things in as to not hurt anyone and I take everyone's problems on my shoulders. I have not learned to say "NO" yet but I need to I have a dear sweet family that thinks Mom can solve any problem. God Bless You! |
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December 22, 2006, 9:50 am PST
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Maybe you do need to grimace but if that you dont really your chocie i have made it my mission to read all these post and reply if i can i am laying down while typing i got the keyboard infront of me on the couch and the montior on the puter. I know the feeling when I cloudnt do somthing i told try toi do with them and then I hurt to much i would explain and they were disapoted but did understand and they were 5 and 7 to 9 and 11 i cared for them then i have 2 otther siters and a brother who is only 2. If they cloud understand your son should also. It was actually cute my sister who will be 13 in januar older of the 2 i took care of. When we cloudnt do what we planed she'd invite a friend or 2 over they'd make sandwiches put them on napkins bring a big blanket to my room and we'd have an inside picnic. And i got to stay laying like i needed. As for parents grandparents and otther reltives i have discorved they dont belive you. You are older than me by many years but still pain is pain. My mom was mad cuase i cloudnt chase my 2 year older brother so she left me with nothing a few months back. I am now with my aunt who is kind enough to let me stay. |
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February 18, 2007, 9:32 pm PST
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. I, too, have suffered from RA, since the age of 16, 26 years ago. Just this year, I was also diagnosed with Lupus. Between the side effects of the medications and the limitations of the diseases themselves, at times I feel like I'm in a world all my own. I've always worked full time, until this past summer. Staying at home has been the biggest adjustment for me. I feel like I've lost a huge piece of my independence and self esteem. Like you, I have lost many friends who simply can't, or don't know how to just "be there". Yes, I have to cancel lunch dates when I just simply can't walk, or when I have to rely on pain medications that make driving impossible. I like to think I learned how to be a friend as a result.
More than anything, I think the hardest for me to deal with is seeing the concern in my son's eyes. He lost his father last year to Cystic Fibrosis and he worries everyday that I will die as well. I have made a conscious effort to stay out of the hospital (even when I really needed to be hospitalized) because I want to spare him that pain and concern.
Some days, I just want the pain to end, whatever that takes. If it weren't for my son.......... |
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July 1, 2007, 5:36 pm PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. I am so glad you posted because I can relate to your story in so many ways, especially feeling invisible and knowing your friends and family don't understand because it doesn't look like anything is wrong with you. I'm 51 and I've totally stopped doing all the things I love (dancing, riding my Harley, sewing). Even Dr's don't understand and look at you like a drug addict if you need more than Motrin for pain. RA meds are soooo expensive, too. My co-pay on two of them is $155.00 each. Now, my husband, who is wonderful, was just terminated two months before he could have taken retirement so we will have to find a way to pay $1300.00 per month for COBRA coverage in addition to those co-pays. It doesn't pay to be sick in this country. I am 51 and got my diagnosis 10 years ago. I recently checked out the support site at the Arthritis Foundation website but got so much information that scared me to death in the first 10 minutes I decided not to go back. I usuallly have a much better attitude than right now because of my husbands job, so please don't take this first post as the way I always am. I still have good days and when I do I make the most of them. Not long ago I went up in a 1929 open cockpit plane which had been a lifelong dream. It took three men to get me in and out but I didn't care. What a blast!! My husband planted flowers for me, too. Beautiful red hibiscus bushes that I enjoy with my Yorkie, Edsel. I hope you decide to vent here again. Venting is good for the soul sometimes. Bright Blessings |
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July 16, 2007, 10:49 am PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Hello, My name is Jenn and I am 20 years old and I have Crohn's Disease and I have had this Disease since I was 14 years old. I have a very loving boyfriend and a handful of true friends, but no one truly understand what it is like to be is chronic pain. I am very young and many doctors think I am a drug seeking person, when truly I am in a lot of pain. Yet because I am so young and so sick it is hard for doctors to believe I am in chronic pain and not trying to get drugs from them. Why do they all think I a addicted to pain killers and I am not truly sick? I have never met someone as young as myself and in the situation I am in right now but I wish I had someone to talk to. I love my family dearly but a few times I have had a very close family member tell me she is embrassed of me when I am sick and in pain. she has told me that so many times that now I hide from her as well as everyone else because I feel as though I am worthless around them. I used to be very active and I played sports all the time and now its difficult to swim or walk for more then 5 mins a day. I don't like where my life is taking me and I hate that I have to fight so hard everyday just to keep going. I am sick and tired of being sick and tired. I wish there was a cure for Crohn's Disease but there isn't and i have to live with what i was given to me by God. I have a loving boyfriend who takes care of me everyday but I feel so guilty for relying on him so much that I am afriad I will lose him to someone who is healthy. I am lost and scared that I will have to live this way for the rest of my life. Does anyone have any advice for me so I can cope with my situation better. |
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July 23, 2007, 3:42 pm PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Dear fellow RA patient - you are not alone.
That said, although I empathize with your pain, I do not relate to your violin. At age 11, I was diagnosed with Polyarticular Rheumatoid Arthritis in every joint in my body. I have since been diagnosed with additional diseases, Scleritis, and Raynaud's, believed to be triggered by the RA. Yes, I feel extremely old, often have debilitating pain, hate how my ligaments pop, and I'm scared to death of the future. Now age 23, I'm hesitant to ever marry as I know I'll be imposing a huge burden on someone else. I'm scared of becoming the crippled old woman with claw-hands. I still am trying to come to terms with the fact that I likely will not have children due effect of the biological-modifying drugs I've been on and my inability to care for a child. Rheumatoid Arthritis is painful and scary, and is ten-fold so when it occurs to child as they never get to experience the healthy freedom that you had up until your 50s.
Therefore, I must say I'm suprised at how you cry and carry on about how bad things are. If there is one thing a disease can give you, it's perspective. You are alive, have all your senses, and have a family. You do not have paralysis, or a fatal disease such as cancer, MS, Parkinson's, etc.! You can live with arthritis - so be thankful for that!!! Life is beautiful!!! Did we deserve RA? Absolutely not. But did we deserve to be otherwise healthy, enabled, and to be born in a country of opportunity and excellent healthcare? Absolutely not. I am more thankful for what I was given (and the worse diseases I was saved from) than I am upset about the challenges in my life. I don't know what the future holds, so I'm going to enjoy everyday I can instead of worrying about what the future may hold! Even if in 10 years I am disabled in a wheelchair, I'd much rather look back and say 'Wow I'm so glad I enjoyed life back then...I'm glad I didn't waste a minute of it feeling sorry for myself!' When life gets tough you either have to toughen up or cry about it....and you only get one life, so from experience I'd recommend just counting your blessing and making the most of everyday! So what if I don't get married, have children, and a 'normal' life....I'm still so fortunate to be alive, intelligent, free, and have an amazing friends and family!
Try complaining about arthritis to someone who is dying of cancer. Your perspective on how great you have it might change a bit....
Best of luck on enjoying your life!!! |
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March 20, 2008, 10:10 am PDT
Quote From: ladidi100 Hello; I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE). Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100. I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases. When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too. You then become a person who is 'invisible' to most friends and some family members. They either don't believe you are in pain all of the time, or they don't know what to say. It's like you have gone off the radar screen or something; it changes your life forever and it is a real shock when you find out just how others perceive you and your disability. Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal. My husband is great at doing housework each day after working a full day at his place of employment. An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on. I just smile (grin) and bear it and put on a good front most of the time. Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'. Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things. Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me). God is good and I do not take anything for granted (most of the time :)). Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes) Blessings to all. Hi, This is my first time on the boards, but to all of you going through filing for disability, DO NOT GIVE UP!!! I tried it once on my own and quit after all the paperwork and was denied. I then hired an attorney who only charged if I was approved. This was from a radio ad so I was skeptical. But so glad I did that. I also have fibromyalgia and chronic headaches and neck pain. I had an occipital neuro-stimulator implanted which helped 40% of the headaches, but I still get them every day. I also get frequent UTIs. All of this was documented (since 1990), but they will only go back six years, I think. Anyway, the disability took a total of two years to the month and a ton of paperwork, letters from friends and family, and all the records from my drs. Yes, I had two denials beforehand, but the attorney said they always do that. When the hearing date came, (I was a wreck at this point), I had my husband and best friend with me, but the judge just wanted me in the room. We talked (very nice man) and he made a bench decision, which is almost unheard of (according to my attorney). This means he approved it right then and there. Usually they listen to you and then you wait two to three months and get the approval or denial in the mail. I can't stress enough to keep going through this. It's stressful and when you don't feel good, it is hard to fill out (and remember) all of the paperwork. I typed a lot of mine out because of pain in my right shoulder and neck. You can also call the social security office and have them fill it out over the phone or have your attorney's rep help you. I just got approved in Oct. and I have received a few retroactive checks that helped enormously for my dr. bills and then my monthly checks started. I do not tell anybody in my extended family that I am on disability because of the stigma I feel is there for people who "don't look sick". It's tough having these illnesses, but the stress having insurance and dr. bills paid is at least a blessing. No, the pain does not go away, but I feel acknowleged in my pain and I am NOT nuts. So, please get an attorney who specializes in disabilities only and charges you only depending on your approval. I can't stress this enough. They want you to quit so you won't get approved. God bless all of you. I know what you are going through. My prayers are with you and your families.
I, too, have a very supportive husband and my kids have moved out (they are 25 and 27). This makes a difference now. I no longer stress about them or worry half as much. My husband and I have really bonded in the past two years, and I am so lucky with him. Hope this helped somebody.
Be good to yourselves and hang in there.
Susie |
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