Hi, I just wanted to introduce myself as I've been lurking around here the last two weeks after getting a diagnosis of RA left on my answering machine (?) following my first Rheumatologist appointment.
I am really glad to have found this board as it has helped with how insanely alone I have been feeling while I have been having to wait for my next appointment tomorrow "to "talk about what this all means"...per the Docs message.
What is really bothering me is that I would have thought I would have felt some relief at finally knowing what is wrong with me after over a year of frustrating visits about my horrific joint pain, stiffness and swelling that was originally primarily in my hands and shoulder with my pcp (who just kept that as my xrays were normal and as I had a negative ra factor that my symptoms were bizzare and prescribing vicoden and naproxen). He did finally refer me to ortho doc (who after treating me with splints and prednisone to no real or permanent avail - did at least suggest I see a Rheumy).
The Rheumatologist did dx me on the spot with some sort of form of inflammatory arthritis (I guess due to all the obvious swelling etc) but did a bunch of lab work, xrays and mri to figure out exactly what was going on and put me back on prednisone in the meantime. A week later he left me a voicmail (not sure why I am having such an issue with that aspect - but I am) that my lab work etc was conclusive for RA and that we would be "talking about what all this means at my next appointment" with him.
However instead of reliefthough, I am finding myself feeling very sad, terrified, angry and wishing I were back in the stage of no dx where I at last had the hope that one day I was just going to wake up perfectly fine with this all being just some strange "bizzarre" fluke in my life I would soon be leaving behind.
I've always been active and involved - and while 42 and never married with no kids - I did have hope that that might change some day. Now I am not so sure with this going on and I've been watching my sales career take a a major nosedive with all the time off I have been forced into as well. I have told my sister and mom who I am pretty close to (although they are very busy with their own lives - especially my sis with five kids) what is going on - but they didn't really seem to have any reaction other than to point out themselves and other people we have known here and there over the years with some osteoarthritis that get along just fine.
I also have always had what I thought was a pretty strong network of girlfriends, but without me feeling up to going out on the "singles scene" over the past year or so, I am realizing there doesn't seem to be much else to our relationships really. They do seem somewhat relieved that there is now at last some sort of explanation for my withdrawal and still invite me to everything - but I feel like some sort of ghost that justs living vicariously through their stories across the phone.
In any event, I just wanted to mainly introduce myself at this point and thank all of you for the wealth of information you have led me to with what you have shared in your posts. It has really been the only thing that has been keeping me from going completely nuts these past few weeks.
Regards,
Melly
Welcome to the board!!!oh sweetie...he left it on your voicemail?!Awww Melly....so sorry you're going through this. Hopefully you'll feel a bit better after getting more info from your doctor at your next app't.
Glad you decided to post...welcome!
Kelly
Hi Melly! I am also newly diagnosed. I am just about 42 (in May) too. I just wanted to say that I can totally relate to feeling alienated from family and friends right now. I really don't think this is a permanent thing though, I just need time to adjust to the diagnosis before I can let the people close to me know what I need from them. This unexpected turn in my life has been all-consuming and a real shock (I can totally relate to your ghost analogy).
MY RD ALSO made me mad when she dxd me. At the time, on the phone, she told me I could call her with any questions but then when I did, her nurse told me that I needed to make a 15 minute appt. to talk to her and that her next availability was two months away (when I had a long appt. scheduled anyway). Her nurse was helpful, but I felt completely misled. I thought about mentioning this at my appointment, but decided it was a misuse of my time with her.
I don't know about you, but I know I'll feel better once my RD and I have a real plan in place for treatment. Things just feel way out of control at the moment.
Let us know how things go tomorrow.
Allie
Awww I think that kind of news on a voice mail was unprofessional. Glad to meet you and yes this is a great place for the info we are starving for when first Dx'd.Welcome to AI Melly.Hi Melly, and welcome. I, too, think leaving a message is pretty unprofessional. You probably had a million questions for your RD and now have to wait and wonder. So sorry about that. You will find a lot of support and information here so I hope now that you've found us you won't feel so alone.
Dear Melly and Allie,
How you are treated by your RA doc, makes such a big difference. I'm shocked and annoyed that a doc would leave that message on a voice mail, but I guess he thought you were expecting it .....one way or the other, and that he does this ALL THE TIME. They don't realize we aren't prepared to 'get this' news. I was in denial for 5 years and had some damage done to my toes, and fingers from putting 'it' (the treatment) off. That was 10 years ago and the drugs they can offer you now are sooooo much better. Plaquinel was my only choice and I got migranes from it. so then to methotrexate for years and now (because of unusual problems) I also take prednisone(temporarily), and also Remicade. You may not think so but you are lucky to live in this time when we have these other drugs. Don't be scared, he will give you a few options, and then you'll need to sort out what works best, how much of what drug to take and all of that. It will take a while to have your body react and you may want to keep notes every day about what works and what doesn't. Someone else here suggested that and it is a great idea. You will be able to get your life back (can't drink alcohol and mtx, so be sure to fill in the doc if you want a glass of wine, etc.).
Allie, I don't know why they have these 'really busy' schedules but I've found my doc doesn't work all day, and is gone on vacation (what seems like a lot to me!!!!!), also when Fri comes they are outtta there. It is really mean to tell someone who is in pain and stiffness like we are that 'it will be a month' before they have an opening!! , if you are in pain then you need to buggg them! Call every day if you must and bug whoever answers the phone...insist on a fill-in appointment .....anything that will get you help.
lol, sarah
Hi Melly, I too am rather new to RA. I was diagnosed in November. I got the news when the gal at the dr. office called me with a referal time for the rheumatologist. I asked her why and she said because you have RA. Isn't the personal touch just so comforting?!?
I think I have just finally come out of a stage of grieving and feeling sorry for myself. I have a much brighter outlook on things once again. It took 5 months though. It is a hard adjustment to make in your life, that's for sure!
I am only on plaquenil so far. It is working pretty good for me. It has kept me from having any flares and I'm not nearly so fatigued. I also take naproxen when I am achy and it seems to work. I think I am going to add minocycline at the end of this month as well.
I got a note from my pcp's nurse saying "Unable to reach by phone." "RA positive".
I had been calling everyday for results and had even been told my chart was lost!!! How is that for professionalism?
BTW - 3rd rheumy appt and she still won't say I have RA>
Melly,
I have been to alot of docs lately and I have never had one leave test results or a dx on a phone message. That seems pretty cold since being dx'd with RA is a big deal.
And it is not the same as osteoarthritis. I can see why you feel upset and alienated by the voice mail dx and your families reaction. But I wonder if they just don't understand what RA is all about? Or maybe they just want to convince themselves that it is no big deal because they are worried about you - or think that attitude will comfort you.
I was dx just a couple months ago and met similiar reactions. As my family members took the initiative to learn about RA they have been much more understanding. Forgive them for now, bite your tongue and give them some time to adjust to the news.
It is a hard time to feel so alone. You can get lots of good support here in the meantime. Hang in there, it will get better.
Laker
Dear Melly, you may want to be prepared with a few responses to (stupid) questions like:
"Why don't you just throw those dang pills away?" You could gently say, ya know I'd like to more than anything, but this disease needs 'treatment', the pills help me protect my joints from damage.
Or, "Why do you have so much pain, but you don't look sick?" That's a mystery, but my hands, feet, elbows do hurt 'inside'.
'How can yu have all that pain "JUST" from arthritis can't you take Aleve???" You can say, Hey, regular pain pills don't touch this 'stuff'. It is different!"
We've all had our loved ones say things that 'hurt' us out of ignorance, but if we tell them 'I"M in so much pain I can't stand it" they listen!!
good luck, sarah
Hey THANK YOU all VERY MUCH for your speedy compassionate responses and suggestions. I'm so glad I stumbled across this board and glad I posted.
Guess I will find out tomorrow more about what/how I will be dealing with exactly. I think I am still in a little bit of disbelief and shock - but in the meantime - it does feel a lot better to know there are people here like you all that have already been dealing with this kind of thing and care to lend their support...
Thanks again!
Melly
Hurts, I don't support the multi pill approach to RA. I feel that we need to