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Messages By: ladidi100

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anxious
July 23, 2005, 5:27 pm CDT

Living with RA and chronic pain

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.

 
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July 23, 2005, 6:33 pm CDT

You are special

Hello,

I too suffer from chronic pain, due to Degenerative Disc Disease. I have had 4 surgeries directly related to this, and 6 surgeries for various other problems, though none were elective. I know I need another operation on my neck, which would be the 3rd there, because the fingers in my left hand are going numb.

I was diagnosed with Juvenile Rheumatoid Arthritis when I was 15 yrs old, and went through 2 1/2yrs of pain, which included getting weekly shots of Gold Salt Injections, and weekly blood & urine tests. That in itself was pain enough, but I also had to sell my horse which I'd only had for about 3 months (a childhood dream, unable to come true til then due to moving every 3 or so years as we were a military family), was in the hospital 6 times one summer, and had to travel by helicopter to Keesler Air Force Base by myself for a week of testing.

Now as an adult I've had a total of 10 operations in the last 15yrs, and believe me there's nothing I'd like better than to be free from all this pain. I'm on a prescription plan which includes Methadone, Lortabs, and various other pills, just to maintain the pain, but it doesn't really go away, does it?! I've applied for disability, as I'm a single parent, and haven't been able to work since last October, therefore I have no insurance for myself. I was denied the first time by the people who decide whether or not you're able to work, so I've retained an attorney to file an appeal, which takes anywhere from 12 to 14 months!! I now have maybe 8 months to go before the appeal.I now have been diagnosed with major depression and generalized anxiety disorder, thanks to all the red tape.I am blessed enough to have a mother and an ex-husband who are helping to pay our rent and untility bills, (my mother is using her retirement savings which makes me feel guilty as hell), and we at least qualified for food stamps. What on earth do people do if they have no one to help them? I firmly believe that's where a lot of our homeless people come from, waiting on our government to help them.

I've lost 2 jobs, and a 2yr scholarship, so believe me when I say I DO understand your pain. All we can do is what we are doing, which is just getting through one day at a time. And pray alot. One of my doctors said recently that God must be preparing me for something special. I can believe and accept that, but I'd sure like to know WHEN?!!! Seriously, I'd like to go back to school and major in psychology, because I believe I could help other women in going through times and circumstances like ours.

I'll remember you in my prayers,

Karen

Hi Karen;  After reading your note, I feel sorry that you are enduring such pain; in more ways than one.  I live in Canada and we have a great medical system here.  I had no problems getting CPP (Canada Pensoin Plan) Disability and also a disability from my employment pension.  Do you have an Arthritis website in the US?  If so, perhaps you can get information on that website regarding pensions and advocates for arthritis sufferers;  We do have it here and although the Arthritis Advocates do all that they can, there is still lots to be done.  Perhaps speaking out in this way will let others know the dilemma we face; not only with the painful debilitating diseases, but how our governments are SLOW.....in reacting.  I wonder if their families have any of these chronic diseases and know the frustration and helplessness we go through...???   If nothing else, we become stronger through this disease just coping with day to day life and all that it brings (or doesn't bring).  Like you said, Iwonder what people who do not have family support do?  It truly is sad.  Like you, I also believe that God has a purpose for our lives and one day it will be revealed to us.  So take care, chin up and may God bless you abundantly each and every day.  I too will pray for you and your children and that your government will hear the message and fill your needs.   LadiDi
 
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July 25, 2005, 2:56 pm CDT

Living with Chronic Pain

Quote From: sukie45

I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help.

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope.

Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms.

By the way this is one of my good days.

You have described a lot of the symptoms I am having with RA.  I am currently on a regimen of injections of Enbrel (2X wkly) and methotrexate (1X wkly), plaquenil, folic acid and a couple of others for blood pressure.  I am lucky in that I have a great drug plan but I do pay a monthly fee to keep it going.  If I didn't have it, Iwould be paying approx. $3000. every eight weeks (Enbrel and metho is very expensive).  Like you, I too feel that people my age are doing wonderful things but why is it you never hear about the people like us???  I had to give up my full-time job because working caused big flare ups.  I try to stay positive for the most part  and do pretty well at it, but the constant pain and fatigue can get the better of you but no one wants to hear about those things.  I am also depressed a lot of the time, I am fat (unable to walk most of the time), out of shape but never out of hope. Even though it's hard, I like to take ONE DAY (sometimes one minute) AT A TIME because if you try and look at the big picture and what lies ahead, the depression overtakes what little hope you have left.   I won't tell you to look on the bright side or offer any moronically cheerie euphamisms, but tell me what are the other choices???  Suicide isn't an option because I have a wonderful, helpful husband and two sons and two grandchildren who love me and I wouldn't want to cause them hurt and pain because of my actions.  Let me know if you find another coping mechanism (besides drugs) other than prayer and hope.....I'd really be interested in considering giving it a try. 
 
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August 15, 2005, 5:56 pm CDT

Hi Martha

Quote From: billysgirl

  

 Hello, I am a 48yr old woman with OA. I have had 3 total knee replacement surgeries, one bone fusion surgery on my right foot and carpal tunnel surgery on both hands because of the use of crutches and a walker. The last knee replacement surgery I had was to replace the first one on the right knee, it had been cemented in, and when my then present orthopaedic surgeon took the old one out, my femur shattered, and I was non weight baring for 8 weeks. It was just incredible. So I know all about chronic pain.  I have read all  of the messages and I am sorry that all of you have such problems, the Lord will watch over all of us, and we are all blessed in many different ways,, like the lady that her wonderful husband planted the flowers for her, bless his heart. Thank you all for listening,, and God bless you all.    Martha 

Hi Martha;  It sounds like you too know all about 'pain'.  Having those surgical procedures would also have added to the misery of pain but hopefully after recovery, it was all worth it?   I was curious about the bone fusion surgery on your right foot.  I have been having increasingly more pain in my right foot and I have 'lumps' on the top and side (below the ankle) of my foot.  Some days it's almost impossible to walk without pain and limping; and then another day (not too many though) that I can actually walk a little further before the pain starts to kick in.  I can get around without a cane (I'm too stubborn to change yet) but if I don't have something done soon, I feel I may need one. I have had xrays and ultra sound on the right foot and all it shows is a 'cyst' on the top but I also have a lump on the side as I said.  My Rheumatologist said that he would assess it again next month to see how it is.  My Rheumatoid arthritis started in my feet and has progressed to other joints as well (hands, neck, shoulders, elbows, wrists).  Did you have similar problems with your foot before needing surgery?  I am the lady whose husband planted the flowers for her and yes, he is a blessing to me and thank God for him everyday.  Thank you for any information you can give to me regarding your right foot, i.e symptoms, reason for surgery.  God Bless you and all who are in chronic, constant pain; and I too believe that God only gives us what we can endure.  Diane 

 
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September 10, 2005, 5:32 am CDT

Hi Martha

Quote From: billysgirl

  

  

   Hi Diane,  Im so sorry for your pain. I do not have RA as far as I know. I have OA. But I can tell you what my symtoms were.  I had alot of burning, it would burn llike it was on fire,  and God forbid if I would turn my ankle on the slightest little bump in the sidewalk or a tree root in the ground, I would be in agony.  But that was about the extent of my pain,, but at times if I walked too much or stood too much I would be on crutches for atleast a day and a half.  Right now  I am in need of bone fusion on my left foot. It has been difficult trying to find an orthopaedic surgeon in my area, but I have found a good hospital. The pain in my left foot, is different because there is more deterioration of the bone, I don't know if you've ever had a broken bone, but when you put alot of pressure on it it hurts alot,, but when you take the pressure off the pain is almost unbearable. I hope your dr. decides to do the surgery and take the cysts out and in doing so may discover why you have more pain. I wish you all the luck in the world, and God bless you and your wonderful husband. I too have a wonderful man in my life, and consider myself very blessed, and am about to have another grandbaby, thank you for your concern, and I would love to talk with you more about your flowers, and anything else you would like to talk about, and please feel free to ask me any questions about my condition, and I am a very good listener, so if you just want to talk or are troubled about something feel free to write me again.  All My Best To You and Your Hubby,  Martha 

Hi Martha: Sorry I haven't responded sooner to your reply, but my father has Alzheimers and I had a chance to go and visit and stay for a couple of days recently (he lives 2 hours away).  I stay overnite with him at the Retirement Home so I can see how his condition is progressing.  He also has Chronic obstructive lung disease and I could see how his breathing is during the nite (worsening).   When I see all the old folks with varying degrees of aging, I thank God for the many blessings I have at this time.  My pain pales in comparison to all of the problems I see at the Home. Anyway, I also had to see my Rheumatologist while I was there so I killed 2 birds with one stone so to speak.  My Rheumy didn't comment on whether I should or shouldn't have surgery because of a new concern that we have; I have been very wobbly when walking lately and since being diagnosed with RA, it has been becoming more and more frequently as of late than it did in the beginning. He wants me to put weights on my ankles (5 lbs each ankle) and do leg lifts to see if the muscles can be strengthened and see if that makes any difference.  As you know with arthritis, if we can even walk on any certain day we're lucky so it's no wonder the muscles deteriorate in the legs over time.  I will give this a try for a couple of months and see him again.  As for my feet, they are okay lately, and only hurt more when I try to walk too much or go to far.  I hope you are doing well and thank you for the offer to ask questions or 'just listen' :)    I hope you have a wonderful, healthy grandbaby; isn't it wonderful that God blesses us in many other ways when we are faced with living daily with chronic pain?  It sure helps us get through the rough times.   Glad that you also have a wonderful hubby as this makes all the difference in the world.  Maybe Dr Phil should do a show or a forum on relatives of people living with chronic pain......they are the ones that help us get through.  Take care and do write again just to say you are doing ok and how the new grandbaby is.  God Bless you and yours.
 
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September 10, 2005, 5:52 am CDT

Hi Nekocats

Quote From: nekocats2

Hello 

I am new to this site. I normally post on the depression board which is a wonderful support system for me.  I am here to try and get some ideas from others who suffer from the never ending pain on the 24/7 basis.  Here is a bit about me.  Hope I don't bore you all. 

  

I have had two cervical spinal fusions.  The first in 1999 with a fusion using part of my hip bone.  The second in 2003 using a titanium cage.  These are C4/5 & C5/7.  I suffer from neuropathic pain and when a low pressure system comes in, I know. 

  

I have stenosis and budging disks in L4/5 & S1.  The pain never stops.  I have been on so many medications and not much works.  I was on high doses of Neurontin which almost killed me.  I now take oxycodone, xanex, and effexor.  Sad thing is, if I run out of the oxycodone, it will kill me.  I am physically addicted due to the length of time I have been on it.   

  

I have been unable to work since 11/01 when I injured by lower back again.  I feel like a total failure in life.  I was once very productive.  I was even a volunteer firefighter/EMT and was studying to be a Paramedic.  That is now all gone.   

  

Thanks for listening.  Any suggestions?  I hate life right now.  Just hate it.  I feel worthless and feel like a looser.  The pain causes depression as I am sure many can relate. 

  

Thanks again. 

Nekocats 

Hi there;  I too suffer daily with chronic pain caused by Rheumatoid Arthritis.  When I read messages like yours, it almost makes me feel like I'm blessed that I don't have to deal with that kind of constant pain.  Arthritis pain isn't anything to minimize at all but I just felt lucky to be me when I read your history.   I am on Enbrel and methotrexate injections and plaquenil for my arthritis.  Without these combinations, I would be confined to bed (as I have been in the past) in constant, chronic, excrutiating pain.  I was unable to even sit up or hold a drink of water because the pain was so bad.  Thankfully I have a wonderful Rheumatologist who got me on the right combo of medications.  I only hope the effects of them last for a very long time or I'll be right back where I started.  The cost of these medications runs at about 3 thousand every eight weeks and I am lucky to live in Canada with a good health benefit (I have to pay only 1 hundred a month for it) and my coverage pays 100% of my drugs.   

I have a brother who was an EMT and is now a Paramedic and has his own ambulance transfer service. He was addicted to crack cocaine for a long time but he worked very hard to get where he is now so I know how hard that you worked and it is very unfortunate that you are unable to continue.  I couldn't help but think that maybe you should try getting another specialist doctor to see if there isn't another combination of drugs and some therapy that would get you a better quality of life.  It would be worth a try but never, never say you feel worthless and are a loser.  I would recommend reading the book 'The Purpose Driven Life' by Rick Warren.  It is the most powerful book I have ever read.  There is a purpose for your life and I think this book will surely help you find the answers.  It made #1 book on the New York Best sellers list and I guarantee it will impact your life too.  Good luck to you and may God Bless you and give you the strength to cope with your pain.  Never give up.  Take care.  

 
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September 10, 2005, 6:15 am CDT

From LadiDi

Quote From: pates25414

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

Hi Sandy; Thank you for your prayers and as for thanks for writing about constant pain;...well, writing about it helps us get out our frustrations (at least it does for me).  I am recommending a wonderful book to read (if you haven't already) and it is "The Purpose Driven Life" by Rick Warren.  Wonderful book and it impacted my life in a BIG way.  If you have read it I would appreciate your comments on it.  As for family (namely husband) not understanding your pain, I would suggest you getting information from the internet about your disease, printing off the information and suggesting he read it to see how you and others live with this kind of pain.  I think that educating people is the most profound way of getting their attention and minimizing the ignorance.  Take care and God Bless you.  LadiDi
 
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October 24, 2005, 11:44 am CDT

10/24 "Is This Normal?"

Quote From: kerri1961

Roger would be far better off without his wife.  It made me furious to think that any person,let alone a wife, would behave like this.  

I know from my own experience that  health issues take their toll on the entire family. I became disabled 3 years ago, our income dropped substantially, but our family has never been closer.  My husband and 4 children ( ages 10-20) stepped up with emotional support, for not just myself, but each other; as well as financial improvising.  You do what you can to pay all the bills, they'll be there tomorrow............your loved one may not be. 

I agree with you on this one.  I too became disabled 3 years ago with the same outcome financially, but most importantly, our family has become much closer as well.  I guess this is where you where find out where the 'rubber meets the road' and whether your spouse REALLY does care about you.  Good luck to you and also to all those people who live with a 'LOSER';  sorry but I tell it like I see it. 
 
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April 15, 2007, 7:52 am CDT

In Denial???

The interviews with the grandparents especially made me SICK.  I cannot believe the grandmother can sit there with her "sex-offender" husband and not be humiliated, embarrassed and most of all appalled.   Obviously they are not thinking of or concerned about their grandaughters feelings or the parents of the child.   I will be most interested to see if they ever "accept" responsibility and get down on their knees and ask forgiveness of all concerned and especially the child.
 

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