sweetnakira honey -
You are feeding your anxiety when you want to starve it.
Can you sit somewhere peaceful and breathe for 5 minutes out of every hour just focusing on flowers or pets or your children - staying in this moment and letting the future take care of itself? If so, it will help you more than any words any of us can say to calm your fears.
No more googling. None. You are hereby cut off. You may not read one single more thing about
Remicade, Humira, side effects, complications. Nothing you learn that way will help you stay calm, make better decisions or prevent disaster.
Knowing all there is to know will not give you any more control over what happens. It will just scare you to death with things that are about
as likely as a comet hitting the earth. Truly.
Tell your husband to please turn the computer off if he sees you doing it. And you must let him. Better yet, don't use the computer without supervision
and then only briefly. Keep your posts short and DO NOT read any of the posts that sound scary.
Remember that online support forums like this one tend to have people on them who are the sickest, who have had the most trouble getting good care, who have had the rarest of rare side effects - they are here for support and to share stories and information. Wonderful as they are, the people here are not representative of all the people who have Crohn's.
Most of the people who have Crohn's are happily living their lives with few if any problems most of the time. They don't feel the need for the support of an online group like this most of the time. So they are not here - most of the time. So you will not hear their stories of success, of many years of treatment that worked, of successful management of flares.
People have been using Remicade to treat Crohns for 15+ years. It is safer than prednisone. The clinical research team at Mayo Clinic did an analysis of all the big studies and prednisone was associated with higher mortality, higher infection and higher complication rates than Remicade.
But this is not really about
how safe or effective Remicade might be. It is about
being scared and being sick. When we're sick it's much easier for us to feel afraid and scared of the future. We feel vulnerable because we have to depend on other people - our spouse, our doctors, our friends - to take care of us.We have to give up control and trust that our doctors are making good decisions and that it will all turn out OK.
When you start feeling anxious (ok super anxious) remember that you cannot be there for your children when you are preoccupied with disasters that will almost certainly not happen. And you cannot be there for them if you do not get your Crohn's under control. Frankly, you should be much more afraid of having out of control Crohn's than of using Remicade.
I know you know this stuff. Maybe you have forgotten?
Do you have a therapist, friend or minister that you can go to with all these worries? Someone who can help you do a reality check? Do you see a psychiatrist at all? If so maybe he could help you find some additional drug treatment that might help you. Ativan maybe?
Do you have any relaxation exercises on CD or tape that you can listen to when you get feeling bad? Something that you find soothing and uplifting - hymns, spiritual guidance, heck good old romance novels? A long soak in the bathtub with candles and lavender oil in your bath water?
Or something to get your body really working that's not too stressful given your illness? A fast walk? Going for a swim? Swinging at the park (it's amazing how much effort this takes)? Playing chase with your kids?
I think you should NOT drive yourself to or from your Remicade appointment. You are very anxious now. I can only imagine how anxious you will be that day. And you are likely to be medicated with Benadryl when it is time to drive home.
If you were the only person on the road that day I would say fine. But you will not be the only person so I think it would really, really be a good idea for you to find someone else to drive you. I would hate to see you be in a car accident that day - remember those wonderful kids who are waiting for you to come safely home.
And here is my final piece of advice. When your brain starts throwing up all those crazy notions, when you start feeling like you are a quivering string about
to break - that's when you sing very loudly inside your head - or out loud is OK too -
La, la, la, la, la, la, la, la, la.
Keep it up until that feeling goes away. Sing really loud. Have your kids help you. Say - Mommy needs your help. Let's all sing La La La now. And the next thing you know you will all be tumbling together on the ground laughing out loud cause of how silly it all sounds. And then you should have a big pillow fight.
Many hugs and best wishes.
It will all work out OK.
Patricia