it has been awhile..

By Sue Sunday, October 26, 2008

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Hello everyone,

I know it has been so long since I have post here. I have been SO tired..

I am to scard to start Remecade, so I have been just trying to lower my stress and really take it easy. I am also going to be a Grandmom! My son and his girlfriend are having a baby. She is 12 weeks along and includes me in everything. I went to her ultra sound last week and the nice lady there gave me my own picture! My son and his girlfriend are living with me and when they have the baby they will still be here. I am looking forward to a baby in the house :) Yes I am a little worried about how much I am going to be able to do with the baby. wil I be able to pick the baby up and for how long. I saw ways I can pick up the baby using my arms more then my hand.

You know.. I know this RA is a life long road.. There are days I can not even move off the sofa. There are days where I am better and can move around better. These drugs out there will not cure this. I worry about what these drugs will do to my body in the long run. I have hope they will come out with beter drugs that do less harm. No matter what this is my life... You learn to deal with the pain and the things you an no longer do. I guess I am on the part of the road where I am not ready to take these bigger drugs, but knowing someday when I can no longer do so much more that I will take these drugs.

The metho still makes me so tired and off balance kind of dizzy. but you get use to it.

It will be a year in dec that I started with this. I am facing the fact that it does not just go away and you have to learn to deal with it and accept it for what it is. then move forward with it..

well I took my metho yesterday, so today is a headace and very tired.

I am going to lay down a little bit

Hugs everyone!

Sue

scared to take new drug

Comments (5) | Add comment

Lene Andersen, Health Guide

10/26/08 1:23pm

First, congratulations on the baby news!! That's so exciting!

Second, I get that you're afraid of the Big Drugs - it's nervewracking to read the list of possible side effects. I was scared, too, when I started Enbrel and Humira. But I'll tell you this: they're miracle drugs. The things you can't do now, you'll likely be able to do. The fatigue is much less, your life changes. It can be like waving a magic wand. When you have a big problem, it needs a big solution and that carries bigger risks. It also carries bigger rewards. Keep in mind that you don't want to wait so long that you have permanent damage and remember that just because you try the meds for a while, doesn't mean you can't go back to methotrexate if you don't want to continue. I highly recommend trying. You don't have to feel this way, you don't have to get used to this. You can get your life back.

Sue

10/26/08 3:37pm

helo,

thanks you I am very excited about te baby!

I am still taking Metho, and celebrex. I will keep taking them. Geting my blood work done. Yes he can up the metho. I just do not want to die of cancer casue I took some drug. Or drop dead while getting this IV treatment cause they did not know I have something wrong with my heart. It is all way to over welmeing for me. I am scared to death of being one of the ones that get that lung fungi and have it kill me.

the fear right now out weighs the pain. I take the metho on saturdays. on sunday I am tired. by Monday I am dizzy and off balance. that last until like Thurs. I start to feel better and it is time to take it again. my bloodwork showed my number were starting to come down. I know what this is Ra is doing to my bady. I know I am not alone on this fear of these drugs they pump into your body. Maybe after having it for a longer time of having this I will be ready to take them, or maybe they will come out with better drugs. I went from not taking anything becasue I have such bad side affects from anything I was given in the past. To taking these big time drugs that may do some big time damage.

right now I am just so tired! I have to rest. I want to do some fall cleaning in the kitchen. so I am going to rest now..

thanks again :)

sue

Lene Andersen, Health Guide

10/26/08 10:38pm

I do get it - you have to be at a place where the risk is worth it. And that takes time. You may never get there, but if you do, I wanted to give you a peek at the other side of the coin so it'd be less scary.

Looking forward to hearing more baby news!

Carol

10/27/08 11:01am

When I first found out my daughter was going to have my first Grandbaby I had a broken wrist that was compleatly crushed. My pins came out to early and it did not heal right. I was still in lots of pain, deformed and not much movement. I worried about not being able to hold him. Now I have RA and I am a full time grandma. My grandson was one year old last June. He still does not walk, so I hold him alot. He is a big boy too. It does hurt but it is so worth it. I am really glad I have him to get me moving in the morning. He makes me smile and forget for a minute how I feel. Tonight he is going to Disneyland for a costome party. I hope I get some nice pictures. It is so much fun being Grandma.

Audrey

10/28/08 12:44pm

Sue,

I know how you feel...I scared my self silly reading on all the things I am taking. I have been on Celebrex for about 15-16 months, at some point before my knee replacement my doctor had me taking 2 a day as the gel injections gave me in my knees caused so much inflamation I could barely walk and the pain was awful.

Then a few months ago I found that I had RA...still having pain in the knee that was replaced and had carpal surgery then the RA came...doctors said it was a coincidence? I probably had it and the surgery just brought the symtoms out? Any way, I statred out with 8 meths, three prednisones, three sulpher, one to two hydrocodone a day, one to get up and make it to work, one at night to help the pain so I could sleep. I look back and before I went on the meds, I could barely get out of bed. I still used the port a chair the hospital gave me when I had surgery cause I just felt I could not make it to the restroom that was a few feet away. It was hard to just stand and get to the chair. I had a stool in the shower...there were times I wanted to use my walker again...

Well, I still have pain but the meds have helped, my OB Gyn told me to stop taking them as I was taking too much in his opinion and only take Enbrel injections..after three days I felt like I was going back to square one. So, I am on week five of Enbrel, lower dose of 6 meths a week, down to one prednisone (I can feel the difference lowering this one) and I am trying to only take the Celebrex when my knees are just to painful to get through a day at work. I still break a Hydro in half, it is a low dose and take it at night to help sleep, I have restless legs and pain some nights in my right angle and foot. I like you have a new grandson, the same daughter had a baby 18 months ago and I at that time could not baby sit or pick up her up. Now the grandson is five weeks old and even though depending on the pain level I can pick him up and I am not afraid of dropping him, it still hurts but it is worth it. I have what I call good and bad pain days, never pain free, but a lot of that is the Osteoarthritis I have in my knees. I need to find a good Rhuemy, I am not fond of the one I have. He doesn't read my chart till he is in front of me and then not well and will ask me things about meds I am not even on, I know they make mistakes and they see a lot of patients but he really blows my questions off or ignores them. I will call and it takes a week for a nurse to call me back with blood work results.

I have read enough to know that you have to make a choice this desease will most likely progress and cripple or kill me...you have to weigh the risk...I prefer the quality of life and the chance of stopping or slowing down RA so I take the drugs. I also feel like that when it is our time it just is...so I pray a lot and I have been very lucky so far that I have not had yet any side effects from the drugs or injections except from being a bit tired and an occasional headache from the meth. I choose to take it about noon at work so that it does not mess up my weekend with my family.

Take care of your self and it is a personal decision, I hurt but it is bearable and I can do things I want again, sometimes I do too much and I do have to really be careful as it does come back and bite me sometimes. I actually cleaned three rooms of carpet in my house last weekend. Before I was lucky to make it to the living room from my bed. I was tired but things I use to take for granted I am thankful for, like cleaning the oven a couple of weeks ago, I was proud of my self...heehee! Feel better, I will say a prayer for you...Peace and Grace, Audrey

it has been awhile..

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