My Mommy... | Arthritis Information

I called and told my mommy of my RD appt I had Monday. I waited to call her because I knew she would not be too keen on the idea. So... I called her today and told her about it.

Oh Well.... Just needed to talk about it. Joonie,

Mom's never stop worrying about their children no matter how old they are. You are an adult and you need to go with your gut feeling about what is right for you. It seems like she is honoring that but is just scared.

I cannot even tell my mother about any of the small things...I pretend I am just fine because she gets so nervous and upset it makes her physically ill if she thinks I'm sick. She's nearly 80. Sometimes I would just love to pour my heart out to her but I hold it in instead.

Well, she loves you and is concerned. It's gotta be scary for a mom. Why do you want to get Remicade again when it does cause hbp instead of trying Orencia which might bring down the swelling and not raise your bp?

Sorry if this is a stupid Q that you've answered before.

Linncn2008-05-07 19:38:58Because RD said she was willing to let me try it again, but if my BP goes up again she will take me off it for good.

Plus, my body has already responded to Remicade and it does provide relief from swelling for at least 3 good weeks out of 6 weeks. If I start Orencia I will have to start all over again from loading doses and have to wait weeks before I can get the actual dose that will help me.

I am that badly swollen and inmobile that RD felt I needed the Remicade. Even though she was a little disappointed on how long worked for me, but she said it was better than where I am at now and hiking up the prednisone.

I tend to agree.

Joonie, your mommy is worried about you, that's what she has been doing since before you were born. I'm worried too. How effective is this med to stop strokes? I mean, did your doc say it would stop them or it could or what exactley were his words??? Just be careful. Strokes can really make you inmobile.

take care

I didn't know loading doses and all that. I was thinking you could just get O instead of R. Nothing seems to be that simple does it? None of these choices are easy, and you know yourself and you can judge for yourself. I will be so happy when I can say that for my daughter! Thirteen more years!

But, in thirteen years, if my daughter was in your situation, I think I would feel like your mom does. That doesn't mean you are making the wrong decision, it just means it never really gets any easier on the moms. My two-cents worth. It's tough to be in pain but is Remicade worth the risk of another stroke which definitely could complicate your quality-of-life and those who depend on you? If I were in your position I just couldn't take the risk because there are too many unknowns with the treatment option being given to you now.

I do know if my daughter was in your position I wouldn't be saying "do you what you feel you must do" without a whole lot of words from me before! *Gentle Hugs*
watchingwolf2008-05-08 08:16:12Hi Joonie,

I had a very similar situation last year with my mother when the doctors all thought I had lymphoma. It got to the point where I didn't even want to talk with her about any of it. I went ahead and did what I thought was right for me but kept telling myself she is my mother and scared for me. She loves me but is having a tough time with my problems. I would just try and remain upbeat when I spoke with her, and when I was bummed by my test results and the like I would call my sister because she could handle it. Good luck to you and it's always nice to know that our mothers love us.

Hiking_gal

Yes, it is wonderful to know my mommy loves me so much.

There is really no proof that even Orencia would not cause me to have a stroke. There is a 1-2% chance of hypertension being a side effect. That was about the same for Remicade.

It is just something I feel I need to continue taking. I have been in this RA rut for 3 years now and end of this year... I will be on 4 years of not actual relief from this disease. In 4 years I have had maybe 6 months worth of no swelling from biologicals and Medrol packs. The swelling hinders me very bad, the pain I can take, the swelling is a whole nother story.

Wake up cannot bend most os my body parts because of swelling and there is no working out swelling like there is with the morning stiffness. The swelling keeps me from doing things I have to do... like brush my teeth... I cannot reach a toothbrush to my mouth because of the swelling in my elbows. Sometimes I go without eating because I cannot reach the food to my mouth because of my elbows swelled.

My life right now is dictated by 5 joints - neck, knees, elbows, jaw, and hands. With all those inflammed one way or another my day is shot and becomes very frustrating and upsets me. When I cannot do things for myself or do things I NEED to do, I lay in my bed and cry. I ask God to just take me and put me out of my misery. I am fairly confident that my kids & hubby would be ok. Because I do so little for them right now that, I am just basically worthless. I am either annoyed because I am in pain and cannot move and have to ask people to help me from a sitting position or because I am doped up on pain meds and sleeping.

I am tired of that life. I just want to feel better and have some "fun" while I can. I look at it this way... Everyday I am closer to death, just a matter of when it happens.