Hi . I am a newby to this site. I had RA diagnosed only about 8 months ago, the doc thinks i also have Ankylosing Spondylitis
I would just like to know if any of you are about my age 39, with a yuong family and how you cope. My worst part is my hands, and shoulder , my hands seem to be constantly swollen and painful. My neck is also very troublesome due to the AS. I am currently having physio on my neck and shoulders, i am also going to buy a tens machine. I had one about 9 years ago for my back as i also have a disc prolapse
Anyway thats me
Hi...I am teaching myself that i cannot go full on into everything i used to do..i would garden for hours but 20 mins is my limit now. My only medication at the moment is Meloxicam, but that only works occasionally. My appt to see my rheumy was for the end of dec, it was cancelled by them and is now in April
I also look after my own mother who is severly disabled with RA she is in wheelchair, has had both knees replaced. So i know how the disease is going to progress
She just says to me..dont give in to it..just keep going You cannot wait until April. That's just crazy. Get a different Rheumy and maybe an Ortho as well since they deal with spine problems. First, you have to take care of yourself or you are not going to be there for your kids. Second, you have start teaching everyone else in the family how to help take care of you and their own selves. Kids come out better that way. It's good for them to know that life is not free from pain and illness and that families need to join together to overcome that. Even small children can start to learn this. I agree with playing with them instead of having the perfectly clean house. If you can afford someone to do cleaning are able to divide up the chores, then do it. Don't even give it a second thought. Nothing can replace the time you have with your kids. They are going to treasure you sitting down and listening to them over whether or not you picked up their dirty socks. A good person to talk to is Crunchy. She is about your age with young children and a lot of health problems. She was a ER nurse up until a few months ago. Now, they've changed their lives completely and she is much happier. Hi thanks I am only on meloxicam at present with paracetamol in between My house has the lived in look i am proud to say
My youngest is 4 on sunday and i am enjoying being with him!
I will try and watch out for crunchy too..thankyou Your health is important so you can care I totally agree with that rocckyd
All I can say is - can you get into a Rheumatologist before April? Maybe your general doctor could help you out? That's really a ridiculous amount of time to wait..... I wish you luck.
I agree with the others. April is far too long to wait to get into the RD. The key to this disease is to slow down progression as quickly as you can. Also to control your pain so that you can function somewhat normally. Your kids are at a young enough age to start learning how to help mom out. My girls know nothing different than me having some limitations in life because that is how they grew up. We started with age appropriate chores when they were younger with a clear reward system for them when the chore was completed. We did a chart with stickers on it. When chore was done, they were able to place a sticker of their choice on the chart. After 1 week of completed chores, they were rewarded with different things. You just have to figure out what the motivator is for each of your children and reward them with that. It worked really well for us. As they grew older, rewards changed. We also don't do a chart anymore. They get daily emails from me now with their chore for that day in it plus a quick note to say I love them and appreciate them. I'm 36, have 2 foster children, 19 months and almost 3 years old. And I'm single, and work full time as a nurse. Soooooo, I have ALOT on my plate. I'm also going tos chool part time, online classes. I was diagnosed 1 month ago. Sometimes it is very overwhelming. I'm learning to let somethings go, like housework, etc. My house is not a pigpen, but if there are clothes or toys on the floor, so be it. Unfortunately, it is often my social life that gets the short end of the stick, but that is a small price to pay at this point. however, on days like today, where it is rainy, cold and I'm in pain, I wonder how I do it. I nap when they nap, go to bed when they do and sleep until they get up. I focus my time and energy on them, to forget about the demons of RA. This board is of great support. Hang in there, do what you can and the rest will come. Phatgirl2
Coping gets tuff at times but I am doing really well right now with few
to no flares. Just the occational knee pains, thanks to my Enbrel. I
have RA everywhere, literally and was diagnosed at 4.
My biggest problem right now is back and neck pains which I think is
mostly due to my recent hand surgery as I was quickly forced to be left
hand dominant and it through everything out of wack.
My advise, is not to push yourself, but don't baby yourself either. Set
little daily goals. Even now I have a hard time with this even though
my joints are doing well, fetigue seems to always be there and it's
really hard when you feel good but are too tired to get things done.
Don't be afraid to ask for help and really talk and explain things to
your family. Tell them how you feel emotionally and physically. It can
be more stressful when you try and fake it. If you have a good day, or
even just a few good hours, jump on them. Spend it with your family
don't guilt yourself to do the dishes when you could be playing with
the kids...make sense? It will be a hard adjustment for everyone, but
is very doable.
Hope you feel better soon!
is just the two of us. Needless to say he is not too much help but he does
try.
I just had to learn to let some things go. My house also looks lived in at
this time. I also learned to ask for help when I need it. I am very lucky
that my family also lives in the same area. They are happy to step in and
lend a hand. My friends are also wonderful and we will often arrange
playdates with the kids as their houses. That way I don't feel pressured
to clean up and the kids can play while we talk.
I hate to say it but your tolerance will also build over time. Pain is pain
but you learn to get through it whenever possible. Having someone to
rely on you can be a blessing cause it makes you get up and go. BUT---
you also have to give in occassionally and allow yourself to have a pity
party, curl up in bed and RELAX! Your health is important so you can care
for those that you love.
Becky
for those that you love.
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