Well, hun, I promise you that RA doesn't care what type of support you have...it still beats our a**es! Like you, I am so uncomfortable with the "mommy doesn't feel good" stuff. I get so tired of being sick and tired. But RA doesn't give a hoot if I'm sick of it. I've been sick, literally, for 10 straight months. Not two days in a row have I felt "unsick." It is taking many ups and downs to come to grips that I have a disease and that it is not letting me live my life the way I did or imagine that I would. Local support would rock, huh?! I sometimes dream of starting something local, but for now I rely on the internet for that kind of support.

I do know that my family is learning a lot about life, compassion, frustration, and the good-to-know fact that life doesn't make anyone any promises. My guess about you is that you are like me...never WAS a slacker, but sometimes I feel that is exactly what I am. But what has helped me is this: I observe myself, and I know that when I AM able, I do. Plain and simple. I imagine your family, like mine, knows that as well. I feel trapped in this body most days...wake up with all sorts of 'mind energy' to do this or that or whatever, but the body is boss these days. We would never choose to NOT participate in our family life and responsibilities. And we have not chosen this, hun.

As for your surgery...OMG. How frightening for you! Did the liver problems come up all at once? I'm so sorry. Really sorry. And I understand about not wanting to share your fear with your family. But may I suggest that by not sharing it with your hubby, you may be depriving him of learning and richness and the opportunity to GIVE courage to you? Just sayin'...

So. Come here, let us listen. When is your surgery??

tess

You are definately at the right place for support.   I understand not wanting to let on about your fear, but I would not keep that from your husband.  He needs to know so he can be there for you.  If you keep it from him, he might feel that you aren't trusting him.  I would probably not share it with my kids, but you need your family (hubby, mom, sister etc.)

I sometimes want to just talk to someone about my pain, my fears, hope etc. with this disease and then I find I get sympathy and even fear from others, so I understand not wanting to share too much.

Will you be switching from Meth to something else?

God Bless

cbeach2

7/ 1/11 8:40am

I'm not on any RA meds as of yet. I was just recently diagnosed. They have mentioned steroid therapy, but I can't take that without adverse reactions. I know the next step is the traditional RA meds, and I'd like to avoid that if possible with anything else besides the traditional RA meds.  My kids are all grown, and know of my conditions. It's just embarassing to me to be the only one in my family that can't do some of the simplest activities. If I'm hot, I swell, if I'm cold I hurt so bad I can't move. Thank you for your message. These messages give me hope.

I have been living with RA for 6 years.I am 44 yrs old married with three children my youngest is 6 and half years old.RA run in my family my mother had it my aunt has it an I have a couple of cousin that has it too.I just had knee surgery and I just can't get it back to where I can just deal with my RA.So I understand first hand how you get tried of saying I don't feel good today.I like to talk to RA people so I know I'm not just going thorough it alone.So hang in there,there are always somebody listen. My name is Marvette and I have RA

lisa

6/ 7/09 5:57pm

Please I need to find out about meds Im really scared about ra and all the things im hearing and finding out Iv had this four 4 years and i feel terrible

Marvette

6/ 8/09 9:23am

Hi Lisa I'm on a new med now called Enbrel,because the methotrexate alone was not working for me.With Enbrel you would have to give yourself the needle.I know it sounds bad but it not as bad as it sounds.I did my first shot today it feel like when you are giving a blood test.Are you seeing a RA doctor? You have the right to be scared but you also have to be brave and take care of yourself too. The med do help ease som of the pain that you are feeling.

J Gray,

Hi, I'm so sorry to hear of your difficulties.  Sounds like some things have been simmering for you (trying to figure out how to be the best mom that you can while dealing with a chronic illness) and now an unexpected surgery from an unexpected complication.  That's a lot to suddenly deal with.

Do you have friends, neighbors, extended family, or a church family that can pitch in and help during your time of crisis?  While many people have a hard time understanding the challenges of RA, many more have undergone surgeries and understand that extra help is needed both before, during, and after.  Especially with young children who need daily care and supervision.  Check with the hospital where your surgery is scheduled, and find out if they have support systems to help patients prepare and plan for upcoming hospitalizations and at home discharge planning and help.

Most people are glad to help if we let them know of our needs.  Tell people specifically what you will need:  help with meals, help with child care, a hand to hold, transportation.  I know its hard to ask, but its really true that we are strongest together and that many can do what is too much for one. 

Also, it sometimes helps to ask ourselves when we get all tied up in knots, what am I feeling here?  Scared?  Mad?  Overwhelmed?  And then address the specific feeling.  Afraid of the upcoming surgery?  Then research and get info so will will feel prepared and more in control.  Angry?  RA Central is the place to vent!  Overwhelmed?  Reach out to others for support.  In pain?  Tell your doctor and get the pain under control.  Break it all down into little manageable pieces.

Hope this helps.  I know that a post can't solve your problems and make them all go away, but I hope that this helps give you some useful ideas.  And please know that I am sending healing and hopeful thoughts your way.

Josephine   

Josephine

4/19/09 12:22am

Dear J Gray,

 

Thinking of you tonight and just logged on to see if you had posted any updates.

 

I just reread my earlier post and I wanted to add that I hope I didn't sound like "all this is so easily solved and here's what you need to do" because that's not what I was thinking at all, but I'm afraid that's how my post might have come across.

 

I know that  you are dealing with a difficult situation and a few suggestions are not going to make it all better.  But I know how hard RA is and I often get some great ideas from reading the RA Central posts and wanted to offer the thoughts and possbile helpful things that came to my mind.

 

Wishing you the best.  

 

Josephine