I'm loosing it

HI All:

Well I've had my first dose of Remicade and man it's kicked my rear end.  I had the infusion 8 days ago and I still feel like I've been run over by a moving train.  I'm not sure if this is a normal reaction or not.  I'll have another dose of the stuff on Friday the 19th.  So I'll see how I feel then.

Then to top my feeling overall rotten, we received the news that my daughter has my genes and it's looking like she'll need to go on plaq and elavil.  She's been deeply depressed of course I'm worried sick.  She's only 16 and has only memories of me being ill and handicapped with things.  According to her, her life is over and not worth living anymore.  I've been so worried I've made her sleep with me the past few nights. 

I'm feeling overwhelemed, picked on, singled out and overall don't understand why me.  As most of you know, I'm not just fighting lupus, and RA.  But I've got Fibro and blood cancer mixed in with my list of illnesses.  I pray each day that it brings me closer to the day that I'll hear the words from my docs that it's time for the transplant.  I can't help but think that it may help with the lupus and RA too, in addition to the cancer. 

Between Nikita and myself I feel like just throwing the covers over our heads and doing like she suggests and never get out of bed.  Of course the Mom in me knows that I need to set an example and show my daughter that there is life after a DX of MCTD.  Well she'll be seeing loads of docs over the next couple of weeks and I'd greatly appreciate any and all positive energy that can be sent my way.  I'm not up to dealing or handling anything stressful or energy consuming.  Well that's the update.  I hope you all are doing better than I am.  Thks for being there as usual for me.

Love,

Barb

You and your daughter will be in my prayers!

From what I have read on transplants (and I'm an RN in the oncology/bone marrow transplant/infusion areas) the doctors are really starting to look into transplants for lupus patients. I've only read a couple of articles on the topic, but hopefully it would be able to help all areas of your health. It will be a tough thing to undergo, but it seems from what I'm reading that you have tons of strength.

Again, you're in my thoughts.

-NOLAtoCO

P.S.

If you lose it, we will help you look for it!

 

(((((Barb)))))

You poor dear. Your load was already too much to handle and now this. I love Sue's post, and by the way, Sue, you sound like a dream of a teacher. I hope Nikkita understands that you have many more medical issues than she does and that she may never develop a serious AI disease. And chances are slim to none that she'll develop MDS. I urge you to pound into her sweet head that she's not going to end up as sick as you are. You don't know what the future holds, but you do know that she needs hope and encouragement. The first thing I would do is arrange for her to talk to someone outside the family, whether it be a school counselor, clergy, or a therapist. She must be terrified. I know you're doing all you can to help her but you have yourself to deal with too.

Take care of yourself sweet Barb. I'm sending all the love and positive energy I have your way. And a cup of Rosie's hot tea as well.

((((Hugs))))

Pat

Barb,

(((hugs))) for you and (((hugs))) for Nikita.  First of all, the Remicade will make you feel tired for the first couple of infusions.  I think it is a combo of the benedryl, MTX and your body adjusting to the meds.  You will feel better, but it will take 3-6 months (it did for me anyway). 

As for Nikita, whar exactly does she have?  I know the fact that it is Nikita is very upsetting, but I have been reading your responses to other patients for a while now, and I know that you are very knowledgeable in all of your illnesses, and Nikita is lucky to have you in her corner.  I'm sure she is scared right now, and she will grieve, but then comes acceptence. 

I will phone you my friend, always know I am here and I understand.

Love Julia

 

(((Oh Barb))) You must be stressed to the breaking point. I sure hope that if Nikita has an AI disease, it's a very mild case and easy to treat. She may be one of those folks who have a short flare every couple of years and it's no big deal. I gotta go now. Love ya Sis! Donna

Hi Barb, I had the same feelings your daughter had that life was over and I have to tell you I'm so glad I went to see a counselor. It worked wonders as well as being on here. It does help to talk I didn't believe it before but I do now.

The best of wishes to you and you daughter.