Monday, October 3, 2011

First 9 months

I am catching up on the last 9 months with the blogs. I should of started this earlier. I have had it all locked up. My treatment began with Enbrel, it is a sure click pen to inject yourself with the medication every other week. I have to say that took some leading up to. I am impressed with diabetics who have to do it daily. I struggled to get the guts up to do it, breathing hard and squealing like a little kid. It did not last. I had baseball size welts around the injection site. My body did not agree with it. They switched me to Humira.

12 weeks later and no relief! When I first saw the Dr in Jan and he said we should have me feeling better by summer my first reaction was...WTF! Summer is like 5 months away!! Now it is September and I wish I had felt better by summer! I miss out on so much with my kids it really breaks my heart. I try to do everything I used to with them but a day at the pool is no longer something I can do. If I go for more than an hour and half I am useless for the rest of the day!!

I started Orencia in may. I still take prednisone daily, along with piroxicam. It seemed at first that the Orencia could possibly work. After two months I had a little more energy and was thinking positively. I took half my prednisone on my day off to see if I could do it and by 3 I was immobile.

The only thing getting me through day by day is prednisone. The irony of it is that it does other terrible things to my body so I guess I go with the lesser evil and continue taking it! I am on  my 5th month of Orencia. My RA Doc is going to switch it next month. I have no relief and am growing tired of trying to find the "right" medicine for me.

I currently have to decide between rituxin and actemera. Rituxin looks to have bad side effects. I do not really need any other diseases!! Any one out there have a suggestion??

I have bad days and good, I try to stay positive. It is hard! I get tired of putting on a front! However, it could be a lot worse! Right??

When family asks "How are you feeling today?" I know they want to hear Good, or at least better. So I do. Its not true but do I want to really say...Today I have stakes stabbing my hands and feet, it hurts to move, I can barely type. I can hold my 1 year old for maybe 2 mintutes...I have trouble sleeping and feel exhausted all the time.....Do they really need to hear that? Do I really want them to be like oh geez, always complaining.

That is what the hubby says. That I complain too much about pain. I thought he was the one person I could be honest with. I work 47 hours a week, take care of my 2 kids, clean, make dinner, and overall do too much. I would feel better if I did less but if I do not do it who will? Last week I asked for some help getting some stuff done. The reply? Oh I don't feel good, you can do it. I tell him it hurts to move my fingers and hands right now, and he says....."You should be used to the pain by now" 

Really?? That is my support. This blog is turning off the subject but I guess I needed to get that off my chest! I feel alone. It is sad when the 2 comments I got from my last blog picked me up and made me realize what I cannot find with my family. It sucks. Thanks for the comments.


  1. Sorry to hear you are still struggling with finding the right medication to get your RA under control. You are not alone in that one. In fact I wanted to remind you that you are not alone in any of this. I am sorry that your family is not more supportive and understanding. Sounds like perhaps they don't understand the magnitude of all that you are dealing with. ((HUGS))

  2. I've found that support from my family is often the hardest support to find. In my case, I don't think it's purposeful on their part--it's that I manage to do so much in spite of the pain and disability, they don't truly understand how much I hurt. And, like anyone, when they hear continual complaints about how I feel (while not necessarily experiencing any change in their world because of things not getting done), the tend to ignore me or get impatient.

    No, it's not right. It's just how it is. My husband started understanding better when he started having his own pain from osteoarthritis, and when I had him read up on RA. He's still not real helpful, but at least he doesn't blow me off anymore if I tell him I'm hurting.

    Communication--real communication--is the best way to change your situation. And remember to check in occasionally with us, here in the blogosphere, who really DO understand and empathise with you. Support from friends, even those of the online variety, is so important.

    I hope you're feeling better today. Sending warmth, comfort and patience your way.

  3. I am lucky to have a very supportive husband, which is why in my blog he's called Superhubby. However, he admitted to me that most of the time when my RA isn't flaring and I am juggling a full time job, 3 kids and cooking/cleaning, etc, he forgets I have RA. I fight throught it and I get it done. His reminder when I have it is me just flat out telling him I am in pain. He normally steps in at that point and takes over kid duty. I don't know you personally, but I imagine it's hard for your husband to see you in such pain too and perhaps he feels helpless in making you feel better. My hubby and I have endured this disease together for a long time now, not without our share of frustrations. I hope your RA is better controlled now. I know in my first year of diagnosis, things were really hard till I settled into which meds worked for me. Good luck to you!