Hi everyone-I miss all of you guys so much!! I don't have a computer at home anymore and am so busy at work-even during lunch-that I hardly ever get to check out the site. Hope to have a new p/c at home by end of november.
I was finally to get my remicade treatment yesterday in the hospital. (8 wks overdue-insurance stuff.) I think it is starting to work some, but really tired. So can I whine a bit? Yesterday before the treatment the nurse was going down the list of general questions, and one of them was 'is anyone picking you up?'...'no, I'm taking the bus'; 'Is there someone at home to take care of you if you have any problems?'..'no, just me'. 'Neighbor?'..'None that speak english'.... I was felling ok emotionally until she asked me all those questions...they made me feel so lonely! I do have a couple of friends in the city, but they recently moved way out of walking distance. I will feel better when I get some sleep, but just thought I'd share. Maybe the treatments make you emotional...anyone else felt that after an infusion?
Hope to be able to talk to all of you again real soon. Take care! Love you all.
Tara
Hi Tara,
I'm new here and have found great emotional support since my diagnosis. I know what you mean about feeling alone. I feel that way too. I think the illness brings it out in us.
I hope the infusions work for you. Keep in touch!
Phatgirl2
I think this whole disease makes us feel lonely even if you do have family and friends around you because they don't really understand the physical and psychological issues that we deal with.
You are not alone here and we all understand and probably have felt the same way you do right now at some point. Hugs to you and hope you feel better soon!
Get that PC! DO eeettt!! Then when she asks you, you can be like "yeah. I gots some i-people I gotta get up with tonight" And she'll be like "what are i-people?" and you can say "people who are not IRL" and she'll just get more confused and you can go "YOU ARE NOT 1337! YOU DO NOT KNOW THE WAYS OF THE HAX0RS!" And then she'll give you happy pills....
I'm sorry. I apologize. I've had a day from hell, and I think I snapped a little while ago, because *everything* is funny....
You're not alone. We're all here for you! Hell, I don't even really KNOW you and I'm here for ya! Don't get mad, get glad. Just like the commercial says...
<3 Katie
Tara, Being lonely with RA is the worse. I am glad you got your Remicade but you just have to find some company. Sierra Club or some other group that you can make friends. You know, I am a little farther but you are ALWAYS welcome in my homeThen, other times, my feelings just catch in my throat when someone ask me, "Don't you have someone to help you?"
The truth is I don't. My kids were teenagers when I was going through the most scary part of this. They didn't know how to react and I just wanted to protect them. Others, abandoned me and that hurt even worse.
Now, my kids are getting older. But since my daughter has anxiety and depression problems, I am always shielding her and taking care of her. She is supportive, but it's limited. I'm due for surgery soon and I don't know if either of my kids can handle being there for me. I'll give them the opportunity. But I've learned not to depend on others at those times.
That awful feeling of loneliness really does close in on you at those times. And, yes, Remicade infusions can make you more emotional.
It is hard to find the support you need. I get support from my friends here and love them dearly. But that physical connection is also necessary.
I just know that you need to build yourself a support system, one person at a time. That's kind of hard where you live and the circumstances of your illness. It makes it hard to get out and meet others.
The other thing you might look for in your area is a support group for Arthritis. The Arthritis Foundation has links. If you can find one for arthritis, one for chronic illnesses would do. The other options to consider, because I remember that you have some problems taking care of a lot things, is to see you can get help from Long Term Care.
They have something like that in Arizona. They help you with cooking, shopping, etc. Being disabled, you should be able to get help with transportation.
I'm discovering all these options as I have become more isolated since I'm not working any more. I have to put things in place ahead of time to take care of myself before I have surgery again or if I get to the point that I can't do even the basics.
But I get the isolation and that awful feeling when someone points out to you how alone you are in the world. But that is really an illusion. The fact is that we are not alone. We must reach out though. That means calling people we know and allowing them to know that we need help.
I hate asking for help. I cannot tell you how many times that I've cried about that. But I want to survive and I want a full life. So, I ask. And, while there are uncaring people out there, there are still gems that make it all worthwhile.
Your funny Katie!! Thanks for the support guys. Feeling better today and hope to go PC shopping in two weeks (next pay check) take care all