Reality hits hard | Arthritis Information

Ok. It's 3:00 a.m. here is AZ and I am up because my hands and wrists are bothering me. I am using the two or three fingers that don't hurt to type. Reality has hit hard and in all honesty I think for the first time since being dx'ed I am truly scared about the road ahead. I certainly know it won't be easy but I'm scared. This RA thing is changing my whole life in so many ways and I don't like it at all. Friday the family imediate and extended is planning to go to the lake and I already know I won't go as I am just not up to an all day outing. I hate to be a party pooper but I am already seeing my limitations. Yikes ! ! ! Took me 20 min. to type this little bit. The best part about getting involved with others with RA/AI is that we have all been in your shoes - the diagnosis, the loss of previous activities, and then the truly scared part once it finally sinks in. Luckily, you will pass through this stage and you become a better person because of it - more understanding of others, learning to develop a quiet inside smile when physically healthy people around you complain about trivial matters, when you wish you could just have one moment away from your disease.

You aren't a party pooper, you are learning the hard part of acceptance. My first year after dx was rough mentally, but now its better, and with proper medical care finally, my life is better too with alot of the symptoms controlled finally. I know this disease is still happily partying away and something new always crops up, but its great to be able to vent in forums like this - don't stop posting, we need you too. Cathy

i know exactly what you are going thru. I have woken up about three or four am every day this week. my hands and wrist are the worst. You are not alone, my life has changed alot. I find that I am pushing my self really hard to be as normal as possible. In the end I am suffering for it so its my own fault. Hang in there.Don't assume things until you have tried them. you are only visualizing your current limitations. You've just be diagnosed for goodness sakes..give the meds a chance to work. Its hard to look ahead and see better days when you are still learning to deal with RA but this diesase has ups and downs and with meds you will feel better. Don't give up your activities entirely make adjustments based on how you are feeling. You may not be up to a full day of activities but you are certainly capable of sitting in a lawn chair and reading a book. Don't let RA allow you to withdraw..thats the last thing you want to do. The pain med is starting to help a little. I'll see if Can get a little rest now. I am off work today so that helps a bit. You know, I am trying to keep things as normal as before but I am also trying to be realistic. It's a hard balancing act for me at this point, but I hope to get the hang of it soon. It great to have this board so we can support each other. Thanks all for your words of encouragement and comfort. Don't count yourself out yet! You may feel fine on the day of the outing-RA is so unpredictable. I've had the way I feel change from hour to hour.

Mom, it's so early on for you. The doctors haven't even had a chance to get a good crack at your RA. It's much too early to be worrying so much, although I completely understand why you do. The unknown is scary, but there are countless people out there (my sister with RA and my niece with lupus are two) who are leading wonderful lives after their DX. Chances are very good that you will too. Don't limit yourself just yet. You've only just begun to fight and your attitude will work with you or against you. Let us help you along the way. We're pretty good at that![QUOTE=Jesse88]

Thanks Jesse88 for the swift kick in the reality check. I know I shouldn't worry and believe me I try not too. I have resolved to fight this thing like Don't give up going to places, being part of the community, and don't put your friendships on hold. If it weren't for my friends and family helping and supporting me the last 10 years I would have been so much worse.

I've said it time and time again - Keep your family and friends close to you. There are ways you can see your friends, keep in touch, spend small amounts of time with them but make that time special. You can go to family outings but prepare yourself for the fact that you may not be able to spend the whole day. There may be someone else who can't and you can come home together.

Or you can take a lounge chair along and lay under the trees for part of the day and read. You won't be able to do things exactly the way you did them before. You may have to modify how you do them but make sure you somehow participate. And like others have said, since it's so early in your disease process the meds will probably work effectively and quickly. Take care and let others help you. Lindy

mom2three, you are so right that it is a balancing act. You might not be able to go for the whole day, but maybe you can if you take it easy, or go for half a day, or whatever works for you. Sometimes I am hurting unbelievably bad on Tuesday, but on Friday I feel much better. The trick is to be prepared (bring what you need, know you might not stay the whole day) without projecting (there's no way you can go, you're going to be miserable).

I hope you are able to enjoy your 4th, one way or another.

Mom2threeinaz,

I am joining u as new to the group.This is my first post and I'm not sure what to do. I have suspected (as well as everyone else) that I had rheumatoid arthritis, probably for the last 5 years. I was tested and tested with negitive results. Finally, I was diagnosed with RA last year, only because my hips were hurting so badand they finally did xrays. Iwastold I needed dual hip replacements so I jumped into that, not really having time to digest the diagnosis. Now I'm told I need dual knees, my shoulders hurt like heck, etc. It was like boom, here's your diagnosis and everything just fell apart.I am a Mom of two boys, 14& 18 and am scared to death. They immediately started me on placqunel, tramadol, percacet, MXT (just recently - 8 pills/week) and nextweek I start on oriencia. It's been a whirlwind! In the mean time, I am getting ready to send one kid off to college. I feel like I've been crushed like a bug. In constant pain yet trying to maintain a normalcy for my boys. And get this, I worked for the Arthritis Foundation for 20 years. The scary part is, both of my parents have passed away, I'm an only child, I moved to a new city and don't know anyone, and my husband has his own autoimmune disease. Wow, don't I paint a pretty picture?

Deb

You came to the right place - there are many folks here who understand.Hi Dlhamaker, welcome to the forum. Start your own thread and introduce yourself again to everyone. It's a good group to help you through the tough times. LindyHello dlhamaker,
So sorry to hear of all your troubles and frustrations getting dx'ed. I also have boys. 3 college age boys. And yes, trying to keep things as normal as they used to be can be struggle and I am scared at times too, but we are in a good group here. The folk here are awesome and they are always ready help and lend support. We are in the right place.
Mom2threeinaz

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