Hi there, been coping not too bad recently but the RA is causing swelling in my hands now and even in the top joints near the nails too. Basically I am frightened and wanted to ask for some help. I have a 2 year old child and I am very afraid that I will not be able to do stuff with him soon - so far I have been coping - RA has not stopped me doing anything - all be it it's hurt a lot and I've had to be inventive but I've been able to open doors and walk up stairs, take my son to his toddler classes and get on the floor to play with him, mostly - I know everyone is different but do you think I'll be able to do this for some time - does everyone still function to an extent - the fear I'm feeling is that I am not going to be able to use my hands to do stuff for him and that I'll not be able to walk or take him to nursery - can anyone give me any insights - I have had RA for a year and a half now and mostly I can control my fear but it's really really getting to me just now but to be honest I would feel better if I just knew what the truth would be - I need to know if I will be able to go on doing stuff or if I won't and I find it so hard not knowing. Is everyone else still able to get around and use their hands etc, usually I am ok but I am having a real panic attack just now - find it hard to breath etc so have been doing the paperbag thing - take care everyone.
You're right...everyone's experience is different. My first year sounds similar to your experience. It was pretty bad for awhile and seemed to get worse. In my case, however, when I finally found a medication that worked for me, methotrexate in my case, I started improving and now, almost 2 years later, I am functioning very well, no joint swelling and I'm even playing in a mandolin orchestra which is very demanding of the hands. So, there's certainly hope for improvement though it can seem awfully slow and requires a lot of patience and perserverance. I also struggle with fear and anxiety sometimes. I've started practicing an easy form of yoga and mediation which has helped a lot. Everyone is different of course and you have to find what works for you. Writing also helps me control anxiety...I write poetry which helps me express what I'm feeling instead of burying it inside. I wish you well...hang in there!
Alan
Flint, I can't remember if you are still working or not. I just recently started the disability process. I have no young children to take care of. They told me I might be eligible for Long Term Care which means that they cover my medical and have someone come in and do those jobs (like vacumming, cleaning, yard work, even dressing) that I can't do.
It may be possible to get that kind of aid for yourself. Look up your Long Term Care for your state. You might have to call around. If someone can aid you with your child's needs, then you can spend your energy with enjoying your kid.
The best thing is to get the inflammation in your hands under control. You need to tell your doctor how much this is affecting your life, especially in caring for your son. Maybe they need to do a Predisone pack, up MTX, change meds.
In the meantime, you can reduce your pain and improve your function using parafin wax baths (twice a day), possibly wearing wrist splints at night (this really helps me the next day), avoiding repetitve tasks. Also, use the sports cremes. They help a lot. But your description of your inflammation sounds pretty severe and you should get something done right away. If you don't, you face the possibility of permanent damage in your hands. They should xray them.
Push your doctor for answers. Emphasize how much this affects your daily activities.