A letter to all the Rheumatoid Arthritis "Newbies"

Wow!  I wish someone had written a letter like this to me 10 years ago.  Reading this letter, the old "newbie" in me is tearing up... I guess I didn't realize I still have unresolved emotional issues having this disease.  Thank you...

I think that was a wonderful letter! Thank you! It brought me back to my days as a newbie and I keep wishing i had this website back then. At the same time, it is an experience that in some ways you can't understand until you go through it. I think the most important thing we can do is give support to our fellow fighters just like you did with this letter.

your letter couldn't be more true. i wish i had seen that in the beginning. as a newly DX RA sufferer, since Aug, I got the very inspiration you wrote about when i found this site.  i felt everything you wrote about, and fortunately, only after only 2 months, i was lucky because that's when my RA was "controlled".  i very seldom experience pain anymore, except the occasional twinge, thanks to plaquenil and prednisone.  i feel like a million bucks, and i thank the ones with 'experience' who helped me find the energy and the ambition to stay in this rotten fight.  I pray that my pain stays away forever, or at least for a very long long time...

Hi I'v now been officially diagnosed a 1 1/2 years ago and I still don't get this desease. one day I feel I've got answers, then a new pain occurs and I'm not sure wether it's a flare up or here to stay.  I just barley started humera last week with mexatrexate that i was already taking.  my major question to anyone that knows this  I still seem to have the pain when there is no real inflammation, all I've heard from Dr.s to sufferers, is it goes together???? I had to be a bitch to my doctor to get Humera because of the pain and recently this week my knees hurt!  I'v always been active in my past and always fighting the weight issues-i think what depresses me the most - is not being able to walk it off or excersize it away, like i was able to do with my body prior to this. The dilema is what to do now? what do I do?  I really sound like i'm on a pity party, Im really not trying to be - I'm confused and really fustrated as to what I can do now and not what I cant! It is depressing, my family goes everywhere without me, I don't even fit in on conversations because the mothers at my kids school are so energetic and planning events i cant seem to get involved with, so beyond everything this desease is isolating me away from people and thats where for the depression is for me.  I can't seem to find my place any real suggestion email me please, thanks glori

That was wonderful, Holly.  Thanks so much.

Thank you so much for writing this! I needed to hear it so much. I was just 'formally' diagnosed 2 weeks ago and feel like I have been hit with a truck.

TO HOLLYBGROOVIN, WHAT AN INSPIRITIONAL LETTER. REGARDING NEWBIES. I AM 54 YEARS OLD , WORK 40 HRS A WEEK, AND HAVE BEEN ASKING MYSELF HOW I CAN CONTINUE. SOME DAYS I AM IN SO MUCH PAIN, IT MAKES YOU WONDER HOW MUCH LONGER YOU CAN CONTINUE DO ACTIVITIES OF DAILY LIVING. COULD YOU GIVE ME SOME POINTERS REGARDING MD? I AM NOT SURE HOW AGGRESSIVE I SHOULD BE EXPECTING MY RHEUMATOLOGIST TO BE, BUT WE KEEP TRYING DIFFERENT MEDS, THEN RETRIAL THEM IF  I DONT INITIALLY TOLERATE THEM. I REALLY FEEL STUCK IN A RUT. ITS AMAZING THAT ONE DAY YOU CAN GET UP AND BE IN SO MUCH MORE PAIN THAN THE DAY PRIOR. IF YOU HAVE ANY INSIGHTS OR SUGGESTIONS, I WOULD LOVE TO HEAR THEM  THANK YOU FOR YOUR TIME. jam618143@yahoo.com

Hi there, Holly!

I'm Holly, too, although I have sons your age and older :)  Your letter made me feel so much better simply by validating many of the same issues that I have had!   Until I was diagnosed with RA in early summer of 2008, my own mother insinuated that I was a hypochondriac!  Yeah, my MOM.  She's never really been in my corner, so to speak.  In any case, I have the best husband alive- although it took me four tries to find him, he was well worth the wait.  We got married in 2002 and I like to joke that he should have known what he was getting into as he proposed to me while I was in intensive care following spinal fusion! :)  He's younger, too, and rather than think he should be with someone younger without the health issues I have, I am trying to understand that the reason God gave him to me was because he had the courage to face my many health-related problems!  He is a true blessing in my life and he never complains about helping me dress, shower or get out of bed.

Since I am, as you say, a relative newbie to RA, I am not a newbie to major health issues having survived breast cancer in 1991 and my oldest son, Mark, had Hodgkins Disease when he was just 7 years old.  He is a fighter in every sense of the word, too.  The cytoxic drugs he took as a child did major damamge to his soine but that did not deter him from playing college level basketball and rugby.  In his junior year he made All American in rugby, too!

I have had so many questions about my RA and the treatment that is NOT helping and I am sure I will ask so many questions that people will say, Oh, great!  HER again!"  when I post my questions.

For now I just want to say thank you, Hollybgroovin :)  LOVE your name!  ttys

ciao,

Holly

i just want to thank you for this letter. i found out i had ra dec.20 2008 merry x-mas i have never felt so alone like i have in the past month the pain is so bad at times i dont want to complain because i sound so depressing i think my husband thinks i'm losing it. i would really like to know what to expect i am on methyprednis and folic acid every day then i take methotrexate once a week and it was so bad i didnt go to work 2 days then they sent me home the next day i feel useless will i ever feel like me again and does the joint damage continue forever? 

                                                           thank you

                                                                 joy

Hi and thanks for the encouraging letter.  You truly know what it feels like to have RA.  My RA was discovered September 2008 and I have been on a journey ever since to understanding and get info. on this diesease. My Primary Care Physician told me from the beginning that it would be a serious matter; once i described the symptoms.  He was determined to do all tests necessary to find out what was happening medically.  After many test it I was told it was RA and  aggressive type.  By chance I found a Rheumatologist in the next state over from me that is well known.  He has agreed to find a medication coctail that will fight this disease equally as aggresively. My levels were off the chart, over 218.  I have been living in constant pain and depression.  Like now I cannot sleep and up writing this email.  My medications are celebrex , folic acid, pantoprazole(stomach), methotrexate and humira.  I also take calcium, vitamin D, iron and a multivitamin.  All of this medication is just so overwhelming, beyond any words!  Any and all help, advice will be appreciated.  Thanks already for the uplifting post.

Theresa

Some days are tough and reading your letter helps

I was diagnosed in August and am still struggling to find the right meds to get me back on track. I am worried I will never be myself again. I too had symptoms actually since childhood but the symtoms were always dismissed as something else or nothing at all.  The true flare that revealed the diagnosis happened after my little girl was born. She was a year old March 16.  Your letter has touched me.  It is a good feeling to know someone knows how I feel.  Thank you so much for writing this. 

You have no idea how much reading your letter helped me.

Brad

I was having a bad day today-your letter was found during a random search for support.  I am newly diagnosed. Have been seeing a rheumatoligist since Oct. but due to inconclusive results, she did not give a clear diagnosis until June - during which time I thought I was going insane/turning into a hypochondriac.  Surely if the doctor didn't think it was that bad I must be imagining some of it.  Now, I am so depressed I don't see the end of the forest for the trees.  I am already living with diabetes, now this!  Today I can only see the things I can't do  - like having a hard time typing this - but I teach middle school - how in the heck am I going to do my job when I can't hold a pen comfortable anymore - its a little tought to grade papers that way!!  Argh - I feel like such a wimp, but I just want to curl up and cry  - wait that would hurt!!!!!  Knowing from your letter that I'm not alone helps - and I'll just have to hold on to the thought that this medicine will help eventually and some days I will be able to put on a bra by myself!

Your letter brought me to tears as I read it this morning. I am there where you say. Right now, I'm right there in between fighting and giving up. Everyday it's different. I live in silent pain. I don't want my kids to be afraid and worried. I don't want to stress my husband. My extended family cannot or willnot understand and they all seem to think they have an answer like I have to eat healthy- that will cure me for sure. And I have also gotten, those medicines are gonna kill you! So basically, I feel no support or understanding in my whole world. Every now and then I search RA sites to read others stories, to find a someone out there who gets it. Today I found you and your encouragement. I appreciate that you took the time to write this and today, may be abit better for me because of it.

michelle

 a huge thanks to Hollybgroovin.  I have a few tears in my eyes from your letter.  Just what I needed to hear since I am a "newbie" and am feeling all those feelings.  I think I have found a place I can come for answers and support.  Hugs.

I guess I'm still in denial. Most times, I think that the pain will NEVER go away. It's excrutiating. I can barely walk even with the aid of crutches. I have a job that requires physical strength and I wonder how long my employer will put up with me....and as far as that goes, my wife and family. All I want to be able to do is walk, with or without pain. Will it go away?

I was literally diagnosed today with RA and I have been crying on and off all night...........I am vigurously researching online, and your letter was exactly what I needed to stop and hear for a minute. I am scared, upset...........I just feel alone like you said........like nobody gets what this is or the pain I have been enduring for so long. I do not want my life to change...........but right now I just fear my future.........thank you again for your words and support............

Thank you for your letter. I was diagnosed this year and the pain, I expected. What I didn't expect is the depression and extreme fatigue! Is the depression merely "situational" or does the disease actually change the chemical balance in your brain?

For years I could always count on the fact I was very healthy and could work 12 hour shifts and make enough money to maintain my home, put my kids through college and have enough for a happy retirement. This blow came out of nowhere! I have never been sick, really!

I started feeling the pain soon after my divorce. My ex-husband was very unsympathetic and the stress of our horrible marriage, my mom's illnesses and financial situation I'm guessing, allowed the disease to emerge.

My kids are often sad, but helpful, my wonderful boyfriend is understanding and kind. I feel so inadequate because I can't do the things I used to do any more. I am looking at going on disability from my job which is terrifying! My ex-husband does very little and pays me almost nothing, supporting my kids is all up to me, and I'm not the person I was 18 months a go!I feel lazy, when I know I'm not, so there's a lot of guilt, too. I've almost "passed out" from fatigue, at work twice now. I'm a pharmacist and have to wait for coverage before leaving, and I know my bosses are not happy with me! I chose my profession because it was something I could do even part-time as I got older. Now I'm not sure if I can work much at all. The uncertainty is Scary Stuff!

Wow, this letter is exactly what I needed to read!
I was a sufferer for almost 8 years, and I finally got diagnosed with Rheumatoid Arthritis!! 
This has given me such hope, I am also 23, and to know that you have coped so well and are continuing to is such an inspiration. I can't actually believe how accurate everything you described is, and I will be emailing a copy to my family so that hopefully they can begin to understand what it is I have been going through!
Thank you so so much x 

I don't have RA, but have a progressive psoriatic arthritis that causes a lot of the same kinds of pain. I was diagnosed within the last 5 months but started all the diagnostics that go into determining a diagnosis over the course of this past year. I'm in my last year of graduate school, and the pain that sent me to the doctors and the course of determining a diagnosis and treatment made it really tough. I had those days that were hard to get out of bed because of pain and depression. I tried most days, some days I threw in the towel and stayed in bed. 

It's gotten a lot better since we've started a treatment that is beginning to work. Today is a tough because of the change in the weather but revisiting this letter helps. Thank you so much for sharing this, and your strength. Maybe we are all a little bit stronger when we can share the burden and our strength. 

I am a RA Newbie .And i thank you for writing  this letter for us. I did'nt know where to trun  are where to go. This letter lets me know that there are still  some good people out there. And i am not alone.                                                                                   Thank You.