Just a vent

I love winter, love New England , Hell I love shoveling snow ! I went out on Friday to shovel the beautiful, light , and fluffy snow. Saturday I could not move, my hands just burned. My back would not straighten without sharp pain. All of you know and understand the pain and fatigue.
My oldest can see when I am in pain, will ask me about it, which makes my heart ache. I want to play with them in the snow and not feel horrible the next day. Still fighting insurence company for biologic , the mix does nothing, keeps swelling down and destroys my liver.
Friends ask if I am alright and I want to scream no ! I stopped playing soccer afraid of more pain, but I look fine and they do not understand.

I am done thank you for listening, I will wake up and go to the gym, moving helps. Maybe I will make a snow angel.

HUGS!!!

I'm in CT. Can't shovel. Can't play in the snow. But I can laugh with my kids while they play in the snow. I can take pictures and videos of them and snuggle with them under warm blankets while we laugh again at their antics. It's difficult to go from doing to being because of the pain. It takes a lot of getting used to.

I have five kids. I don't hide my pain from them. They know that their mama lives with pain (and sometimes uses canes or crutches or a wheelchair or wrist braces), but that pain doesn't rule my life. It changes things, sure, but it doesn't make me love life any less. In fact, since PsA has slowed me down, I've found I enjoy life more.

Biologics have made a HUGE difference in my ability to do things. I'm hopeful that come Spring, I'll be able to hike with my family, which I haven't done in years.

I guess I just wanted to say that with time and patience (for yourself, your family, and your friends), things will get better - if not your PsA, your ability to live with PsA.

Libby,

Sometimes when my body is on fire I dream of throwing myself naked in a snowbank to numb everything!

It sucks. Shoveling snow is really enjoyable when it is the light fluffy kind. So is playing with your kids in the snow. I understand not being able to move the next day :(

Libby,
I was just recently diagnosed in late December with PsA. I suspect I have had it for several years, but it went undiagnosed until nearly every joint went haywire in a flare.

Learning to accept the transition from doing to being is difficult. I struggle every day. I hope your insurance company comes through for you and I hope you find relief and joy in whatever way you can.

Audrey

Thank you everyone, I was just having a pissy moment. Everyday I wake up happy to have all that I have. I was just missing something I use to have . I will hit my stride, I have just been diagnosed a year ago but can trace symptoms back to 7 years ago . Have a happy Monday !

HI Libby,

I'm sorry that you are having a hard time with the pain and frustration. Snow is one of the best times when you have little kids and be proud of yourself that you went out Friday and did it ! I know the days after suck, but your children when grown won't remember when you didn't go out with them, they will remember the fun time they had with Mommy when she was playing in the snow !. I feel very lucky my PsA began about 10 years ago and not when my sons were little. If your children are asking to play in the snow and you just can't physically do it...bring the snow inside !! My sons still remember when they were small I would fill baking pans, cookies sheets( anything with sides !) with snow and put in on the kitchen floor. They would get out their cars, trucks, action figures whatever and have a blast building roads, caves and even tiny snowmen. They had an awesome time ! It's just an idea for bad days to bring the fun inside...CAUTION...no throwing snowballs allowed ! If your children are of the age they would like this,maybe give it a try and yourself a break. Hope you feel better today :0)