This was posted on another thread, and I don't want it to go missed - because these questions are VERY common and need to be answered!!!! So folks, fire away!!
daviddvc04 wrote:
"Hi there. Another newbie. Like deb, I'm looking at a likelihood of RA based on results of a preliminary blood test. I see a rheumatologist next week.
To be honest, from what I've read online, the whole thing is frightening.
I'm curious how people initially responded to the news, what they actually experienced as time went by, and how they deal with it now."
Arriscowell, Nice post. Good questions. When I found out I cried like a baby. I thought oh well, welcome to old age just when I began to enjoy myself. ( Early Retirement) For me this really seemed to come out of nowhere.
Anyway after the shock I found this site and started asking questions and found that there were young and old people here dealing with so much more than I. Then I felt like a real wuss. ( Spell?)
I figured I better go ahead and try the meds my Ra doc offered.
This board helped me so much. I dont know what I would have done if I didnt have a place to read about this disease and ask questions.
Anyway right now I just go on with my life like I always did. I dont know if I am going to get worse or not or if the meds will stop working. I am trying to take one day at a time.
Sometimes I have questions and sometimes I come here to offer help if I can.
Anyway, blah blah blah
That's it.
I think I was in shock. Every scary thing I'd ever heard about RA came to mind. I was in denial. In fact, I sometimes think I still am because my symtoms are not typical. But then again, as my rd says, no two cases are alike.
I too, found so much comfort at this board. If not for being able to come here I would have felt completely alone. I need you people!!
For me, it's been a roller-coaster. I'm afraid for my future but I don't dwell on it or else I'd be pretty down. I try to stay up-beat because I all around feel better if I do, but it's not easy. Pain can really get me in a bad mood fast. I don't know if I'd be doing as well as I am without all the people here. You all keep my spirits up!
Thanks for the warm welcome and taking time to post. I know that having a place to discuss this can only be good.
I guess, it's just that I feel like, assuming the rheumatologist will confirm the initial diagnosis, that my life is somehow being cut short. Reading that 50-60% of people diagnosed with RA are unable to work within a decade of that diagnosis really knocked me for a loop. I love teaching, but it's also about being a productive adult.
I'm just 35. This was supposed to happen later. I mean, give me to at least 60 or so.
Hey now, I'm almost 24 and have had it all my life. I'm still working, and I don't plan on stopping any time soon. Don't let the numbers get you down, they are really broad and general, afterall. :)I thought the same thing when I read that statistic. I have been a hairdresser almost 18yrs, and I'm 35. That is my whole adult life. Good grief, I don't know how to do anything else. But I do know hair, and I will give up actually doing hairdressing to teach it eventually, if the time comes.
After reading and posting here for such a short time, I'm realizing that my life is not over, and diagnosing RA in early stages give us a better chance at living a long fulfilling life. Good luck and I look forward to talking to you again soon.
Hey David,
I was beyond hysterical and refused to believe I was going to be some statistic. I researched everything I could get my hands on and followed my gut instinct so I could find a way for my body to heal. I'm on AP (Antibiotic Therapy) and have got my life back but still have much to do. Following research about hyperpermeable gut linings I had my first appointment with a nutritionist today. I refuse to listen to naysayers and anything that will not lead me back into health. It can be done; its a long drawn out process but one I embark on with hope that my future will continue to be one without pain and suffering.
The nutritionist said something cool today...she said anything that gets out of line can be realigned.
Of course, the diet she puts me on sucks...but it has to be done.
Hugs,
Pip
David, first thing to realize that the people on this forum run the gamut of very mild symptoms to the extreme severe symptoms. Some of us were in denial when diagnosed and refused meds, got better on our own. It's not uncommon to go into a pseudo type remission about 2 years after initial symptoms start. That's what happened to me. I ignored it all until I became homebound and couldn't walk. Then I had doctors who played it safe and didn't treat me with the newest drugs.
It's just been in the last 3 years that I've found an aggessive RD and began treatment that has helped me by 60%. I have a lot of damage due to my years of denial. Don't do that to yourself. I have no one to blame but myself. I have heart and lung complications due to my denial of RA. Listen to your RD, start your treatment and continue on the drug treatment. Be more afraid of the disease than the drugs. When you start treatment early the better you will be in the long run. Early onset of treatment stops damage.
I had to quit working at age 58 and I retired. My husband retired soon after and we've spent the last couple of years traveling. You're life doesn't end or even stop because you have a chronic illness, you just have to learn to modify your life and most of the time that's a good thing. Keep us posted on your progress. Lindy
[QUOTE=davidvc04]Thanks for the warm welcome and taking time to post. I know that having a place to discuss this can only be good.
I guess, it's just that I feel like, assuming the rheumatologist will confirm the initial diagnosis, that my life is somehow being cut short. Reading that 50-60% of people diagnosed with RA are unable to work within a decade of that diagnosis really knocked me for a loop. I love teaching, but it's also about being a productive adult.
I'm just 35. This was supposed to happen later. I mean, give me to at least 60 or so.
[/QUOTE]David most people have physical jobs. Teachers and programmers like us have to keep working... because we are unable to get disability.
We can hobble to work and do our jobs.
ps Welcome. That stat used to read 5 not 10 years when I dx 30 years ago. Treatments are getting better.
Hello David and welcome!Again, thanks for all the positive comments.
The rational, objective part of me knows that overreacting, especially so early in the game, is simply a byproduct of fear and anxiety.
But the irrational, subjective part of me is afraid by what I don't know.
Learning these initial results at least gives me some context for some low-level but persistent problems I've had with my shoulders and hands.
And maryblooms, I hadn't read anywhere about memory or concentration problems. Take my body, but leave me my brain! At the very least, I just need to be able to concentrate on a good book! Is this an uncommon symptom?
Hi David and welcome to the board,
I've had RA all my life and worked since I was 13 even though I had both hips and knees replaced at 12. I stopped working 2 years ago because the RA started to affect my shoulders so I couldn't work full time customer service anymore. I'll be 38 in a couple of weeks. I have RA in all joints. I don't think that you'll have a problem continuing to teach.
Steph
When I was diagnosed, it wasn't a major blow because I didn't really know much about RA. I think I've sort of adjusted to the news of the diagnosis rather gradually. I don't really put much stock in the negative statistics about shortened life span, disability, etc. I know it happens, but if there is a 3% chance of recovery, I believe that I'll be in that 3%. I try not to let myself get caught up in feeling sorry for myself and the things I cannot do. I remind myself that there are so many people who have it so much worse - people who are paralyzed, unable to speak due to strokes, children battling cancer, etc. I am grateful for what I DO have and refuse to dwell on what I DON'T have. I'm still alive. I can still walk my son to the bus stop. I can still hug my son and read him a bed-time story. I can still connect with my husband. I have friends who I care for and who care for me. And even though I'm struggling financially now, due to missed work, I am grateful that I am not homeless, or live in the housing projects, etc. I might have gone off track a bit, but I guess I needed to write this to remind myself as well. Welcome to the board! We are happy to have you here! Love, Juliah
Juliah - you're right, we need to focus on the positive.
David - Oh, I don't know, nothing like a good dose of 'near panic' to motivate a person into learning all they can and finding out all their options.
Your brain will be fine for years and years. Yes, we get 'brain fog'. A lot of it is dealing continually with pain. Ease the pain and a lot of the fog goes away.
Pip
Hi David, welcome.
I'm a relative newbie. When you first get onto this board its not only scary but totally overwhelming. Someone (I'm sorry I cant remember who) sent me a link to a 'grieving graph'.... can whoever did that send it to David. The graph really helped me realise where I was with the shock, anger, denial etc. My hubby and I sat and joked and understood where we both were with this.... its not just affecting me.
8 months on I've been diagnosed as sero-positive, start my drugs soon and to be honest couldnt have made it sanely to where I am today without the help/advice/hugs etc that the girls and boys on this board have given me. I will be eternally grateful to the sense of calm that logging on and asking a 'stooooopid' question (because apparently there arent any
Welcome to our big family.
David those work stats are a moving target. Many of those numbers include people who were diagnosed before the current treatment protocols. They also don't break out things like age at diagnosis and type of work.
You justs need to be vigilant and plan for your own situation. Take charge of your finances so you have a nest egg and minimal debts should you ever have to stop working.
By the way, I worked for over 20 years after diagnosis with severe joint damaging RA.
Hey David, welcome. Don't feel so discouraged. Modern treatments areHey David
I was only diagnosed a few months ago and my first reaction was relief. RA came on me suddenly, attacking practically all my joints over a span of weeks, but lasting for months. I could barely move for a long time. When I got the dx, I was happy to start treating it.
I started on MTX, after several weeks with not much result, I started Enbrel. The very next day I was almost normal again. Now I can do almost everything I used to, and I was quite active.
It's been difficult for me to believe that I have RA, there is always something in the back of my mind telling me I don't really have it, this has all just been a fluke. But I guess I believe it enough to stick a needle in my leg every Friday!!
Still, for me, it hasn't been so bad. I hope that it will go the same for you too.
Linda
Hi David & Welcome to AI
I'm curious how people initially responded to the news, what they actually experienced as time went by, and how they deal with it now."
I actually went through a phase of denial before I finally went to a doctor. I spent about 4-5 years having flares in my knees and ankles without going to the doctor because I was afraid...afraid to hear what my in my heart I already knew. At first, I thought I was just retaining water and couldn't for the life of me figure out why. I was taking water retention pills and ibprofen and couldn't understand why it wasn't helping. The pain would be so bad that I would end up in the emergency room but they never found what was wrong. They would do x-rays, wrap my knees or ankles and send me home with pain pills. Then the shoulder flares started. At first, I thought I just slept wrong....really wrong. Finally, I was in so much pain it started to mess with my head and I thought I was literally going crazy because I wanted to cut my limbs off. It was then, I decided enough was enough and I needed to go to the doctor. I didn't even bother making an appointment with a GP as everything I had read pointed directly to RA. My first appointment was with an RD and I received my first cortizone injection in my shoulder. He told me right then I had RA but would do the bloodwork to confirm. I remember sitting there feeling a little dumbfounded and still not knowing exactly what RA meant. I went home and flooded myself with information from the interent. That was also the day I found this board which has been my saving grace many times. Once my bloodwork was back I was diagnosed with what my RD called severe aggressive RA. It wasn't until he said severe aggressive that I had an emotional meltdown. What did that mean? Was I going to be crippled? Was I going to die? Could they fix it? Make it go away? Wasn't I too young for RA? Did I cause this? I was scared, angry, confused, depressed but more than anything....lost.
Since my diagnosis in April 2005, I have struggled with getting my RA under control....trying to find that cocktail. I'm still scared, I'm still angry and I still deal with depression. My life has changed...my life is changing and that's not easy but I am with the help of my new RD and the wonderful people of this board learning to live with the changes.
I could go on and on about everything I hate about this disease but I think what's more important is what I've learned from it. Having RA has made me a more caring, compassionate person. It's made me open my eyes to really take notice of people and things around me. I've learned to slow down in my busy busy life and appreciate the small things and all the beauty we're surrounded by each day and not take anything for granted.
How do I deal with having RA? One day at a time the best I can.
Boy oh Boy did I ramble....I'm gonna blame it on the pills
Peace & Love...Neasy
I just joined this whole message board tonight and am already feeling
better. I am turning 42 next month, and initially went to a
rheumatologist about nine years ago. I wasn't officially diagnosed with
RA and knew it was something much more than fibromyalgia b/c it was in
my joints too. Everything hurt. I switched doctors and the new one said I
had all of the symptoms of RA, but none of the official blood work
results. She put me on Enbrel and then it was brand new and everyone
was put on a waiting list. Anyway...I ended up having what seemed to be
a pneumococcal deficiency and got on antibiotics and felt sooo much
better, so I decided to blow off the whole RA thing b/c it wasn't official
and I thought I shouldn't take meds I didn't need. Fast forward a few
years - I started feeling like I was dying - really. Everything hurt and I
was exhausted. (Trying not to type too much... Anyway, the CRA (?)
something like that...test showed that I have RA. My doc. said it didn't
show up anywhere else. I got on the typical beginning drugs. Then
methotrexate. I've just started taking Enbrel again b/c last week my xray
showed erosions in the bones of my feet. I can't remember who wrote it,
but don't waste time being afraid. Take the meds that will help you and
stay on top of it. I am trying so hard to be positive and thankful that we
have these meds available. I think this message board can help alot. I've
noticed the caddiness, but hopefully it will end b/c I really need a place
that I can be myself and share/learn. Sorry to go on so long, but I guess
I've needed to get it all out. Stay positive and as active as you can. Welcome Betty!!!!Thank you!!!
Howdy David and Betty Boop!! Welcome to our little family!
I was very upset to know that I had developed RA after watching it, as well as Lupus, suck the life from my Grandmother over the past 15 years and then finally win this past October. Due to other health conditions she could not take a lot of the new good stuff for RA.
I still do not know what to think as my RA is not under control thus far. My RD just added 7.5 mg of mtx a week ago today, after being on Plaquenil for over 3 1/2 months with no improvement. I am hopeful that something will work soon. I don't know what's worse, the fatigue or the pain.
My husband was laughing at me the other night because apparently, I would type then snore, type then snore. He said he could not believe how fast I would go between typing and snoring. He was just dying!
Hello again,
Pain, medication and depression can cause memory and concentration loss. Studies also show the disease can also contribute to to them. I don't say this to scare anyone, but it is common and many people with autoimmune diseases complain of it. I think I will start a topic to see how people deal with it.
Is this an inherited disease?In my case, no! There is no one in my family that has it. However there are members where it seems it may be. I don't honestly know which is more common. My scenario or theirs. Welcome to the board David.
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